Tip #1 – Share your science knowledge on WikiGenetics

Multiple people have commented that it would be great to have a list of definitions and explanations that successfully convey the meaning of specific genetics terms. We’ve created a page on WikiGenetics to capture the different definitions that have already been crafted and used by various organizations and communities. Check out the Glossary of Genetic Terms and Concepts.

Tip #2 – Find resources for those who are underinsured

Health insurance is a hot topic anywhere you turn!

For those of you who receive questions from individuals who are underinsured, please check out this resource.

The Patient Advocate Foundation has developed “The National Underinsured Resource Guide”. The guide is intended to help those who are underinsured locate resources and alternative options for coverage. You can search the resource guide in two ways. You may search by using keywords or by completing the online interactive tool to help you find the missing pieces surrounding your particular situation.

Tip #3 – Learn more through webinars

Looking for a way to be involved in discussions about hot topics or to learn about resources that can help your organization without leaving your office? Check out the Genetic Alliance webinar series!

Genetic Alliance offers hour-long webinars in the categories of Hot Topics and Strategies for Success. These webinars often occur on Wednesdays from 12 – 1 PM EST. To see the schedule of upcoming webinars, visit http://www.geneticalliance.org/webinars. However, if you can’t attend during the live webinar, you can access the archived presentations later through the Resource Repository, by searching the keyword ‘webinar’, or on our YouTube channel.

Tip #4 – Learn about the Affordable Care Act

With various pieces of the Affordable Care Act being implemented at different times, it can be hard to understand it all. Families USA and many partners have created materials describing these new protections from specific topics (such as annual limits and pre-existing conditions) to understanding the big picture.

Check out http://www.familiesusa.org/health-reform-central/september-23/ to learn more!

Tip #5 – Stay updated on assistive technologies and transition planning

The Family Information Guide to Assistive Technology and Transition Planning is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide includes sections on assistive technology, transition planning, laws governing accommodations in school settings and a glossary of assistive technology terms and resources. To order a free copy, go to the FCTD website.

Tip #6 – Learn more about medical homes

If you’re looking for a resource to learn more about the concept of a medical home, check out the Patient Centered Primary Care Collaborative (PCPCC). Focusing on pilot projects for the implementation of the patient-centered medical home, PCPCC has created the Center for Consumer Engagement to encourage you to participate in awareness activities.

Tip #7 – Learn your state’s health insurance facts

Looking for a quick way to find data on the various facets of health and insurance coverage in your state? Check out statehealthfacts.org.

Statehealthfacts.org is a project of the Henry J. Kaiser Family Foundation and is designed to provide free, up-to-date, and easy-to-use health data for all 50 states. Statehealthfacts.org provides data on more than 700 health topics, including a children's health facts category.

Tip #8 – Avoid health-information overload

Patients, parents, healthcare providers, and the public are inundated by a constant flow of information from a myriad of sources, both reliable and unreliable. This bounty of information is ever-expanding, along with opportunities to disseminate it online further and more quickly. Some information is credible, and some information is bunk. We need a way to filter out the meaningless or harmful information so that we may heed the high-quality health information has the potential to positively impact our lives.

On September 22, 2009, the Access to Credible Genetics Resources Network, a cooperative agreement funded by the Centers for Disease Control and Prevention, held a meeting to examine these issues as they pertain to the creation and assessment of health information. The proceedings of this meeting are now available to you in a monograph entitled Trust It or Trash It? Creating & Assessing Genetic Health Information. To access the monograph as a PDF, go to http://www.geneticalliance.org/monographs. Please read, distribute, and determine for yourself when to “Trust It or Trash It.”

To use the Trust It or Trash It? tool, visit http://www.trustortrash.org/

Tip #9 – Learn about your rights under the ADA laws

The Southwest ADA Center has developed a Disability Law Handbook, which is available in both Spanish and English. The Disability Law Handbook is written in a "Frequently Asked Questions" format and answers questions about the ADA, the ADA Amendments Act, the Rehabilitation Act, Social Security, the Air Carrier Access Act, the Individuals with Disabilities Education Act, the Civil Rights of Institutionalized Persons Act, and the Fair Housing Act Amendments. Free copies may be downloaded or viewed here for the Spanish version and here for the English version.

Tip #10 – Get involved in the translational research community

Translational research is the process through which biological insights gained through basic research are transformed into products that improve human health. The potential products of translational research are many and varied, including genetic tests, molecular biomarkers, and therapeutic treatment options.

During the past decade, the majority of genetics research has focused on improving our understanding of the biology of genes and genomes. This information has laid the foundation for future research aimed at understanding the underlying biological causes of disease.

Capitalizing on these advances in our knowledge of fundamental human biology will require an increase in translational research in the years to come. If translational research is to succeed in improving human health outcomes, community engagement and advocacy leadership will be essential. To learn more about what Genetic Alliance is doing to engender meaningful engagement of the public and advocacy community and to accelerate translational research, and how YOU can get involved, please visit our new webpage on this topic.

Tip #11 – Spread the word about family health history

“Conversations about family health history should be ongoing, not a one-time topic to be discussed and forgotten. What you learn can shape your future and even save your life.”
– Sharon Terry, President & CEO, Genetic Alliance

With this sentiment in mind, Genetic Alliance is excited to continue developing and disseminating the Does it Run in the Family? toolkit. A two-part guide available in both English and Spanish, the toolkit is a customizable resource available to families, organizations, and all interested communities. The toolkit consists of two booklets: “A Guide to Family Health History” and “A Guide to Genetics and Health.” The first booklet explains the importance of family health history, how to collect it, and how to organize it; the second booklet outlines basic genetics concepts and gives information on the types of conditions that can run in a family. Each booklet can be tailored to best address the intended audience. Personal stories, photographs, and health condition information can all be changed to reflect the target community.

Tip #12 – Educating Kids About Disabilities

There’s always great interest around available resources to help kids understand disabilities, special health needs, and genetic conditions. Here are a few:

1. Kids Quest, a feature of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) website, helps children understand what it is like to have autism, ADHD, hearing impairment, and other disabilities.
2. Looking for suggestions for disability-related children's books, or have you found a great book to share? Visit www.ucando.org/books.html.

Tip #13 – Accessing another great data source!

The Data Resource Center for Child and Adolescent Health (DRC) has redesigned its website! The same point-and-click access to data findings from the National Survey of Children's Health and the National Survey of Children with Special Health Care Needs can now be found in one integrated browsing and search tool.

How You Can Use the DRC Website:

1. Learn about the National Survey of Children's Health and the National Survey of Children with Special Health Care Needs
2. Browse national and state findings on over 200 child health indicators
3. Download and print snapshot profiles on key topical areas for your state
4. Request a dataset and conduct in-depth data analyses on your own
5. Learn to use data more effectively
6. Discover how other state and family leaders use these findings
7. Get expert help by e-mailing us your questions - plus get links to other data sets and resources for improving children's health and healthcare

Tip #14 – National Clearinghouse of Newborn Screening Information Available!

In honor of Newborn Screening Awareness Month, Genetic Alliance launched a Health Resources and Services Administration, HHS funded, newborn screening resource, www.BabysFirstTest.org, in September 2011. The website is an objective resource for expecting and new parents to learn about newborn screening and is a place for families and health professionals to share their questions and experiences.

Baby's First Test is a central site that brings together stakeholders and provides easy access to newborn screening resources from community groups, government agencies, and public organizations. The site also features condition-specific information, state information, family videos, and a Community Corner section, where visitors can learn about reliable sources of information pertaining to maternal and child health. Help us spread the word about the importance of newborn screening by sharing this website with new and expecting mothers in your community.

Tip #15 – Here is a great resource for Youth Programs!

FindYouthInfo.gov was created by the Interagency Working Group on Youth Programs (IWGYP), which is composed of representatives from 12 federal agencies that support programs and services focusing on youth. Check out the Collaboration Center, search for programs based on risk factors they address, or dig deeper into a specific topic of interest.

Tip #16 – A New Resource for Translational Research

NETS, Navigating the Ecosystem of Translational Science, is an interactive model of drug development intended to educate and empower individuals to get involved in translational science. Designed by Genetic Alliance, the model offers a more realistic and nuanced view of drug development than the traditional pipeline model. By grouping related processes into five different “neighborhoods,” NETS shows the general order of drug development while demonstrating its flexibility. NETS also provides toolkits of definitions, resources, and educational materials to disease advocacy organizations and basic researchers who want to become more involved in the drug development process.

Watch two videos to get started – an Introduction to NETS and How to Use NETS.

Tip #17 – Tips for creating a medical home

The National Center for Medical Home Implementation is for health professionals, families, and anyone interested in creating a medical home for all children and youth. It’s a resource that works to ensure that all children, including children with special health care needs, have access to a medical home by enhancing and providing resources, tools, technical assistance and support.  You can find out initiatives and resources offered by state or on a national level.

Tip #18 – Updated Resource for Spanish speakers

¿Cómo se dice "gene" en español? The National Human Genome Research Institute (NHGRI) recently released an updated online Spanish Talking Glossary of Genetics to provide a resource to the Spanish-speaking community seeking a better understanding of genetics and genomics.

New features of the glossary — originally launched in 2003 — include an alphabetically organized navigational tool and lists of related terms. It includes over 200 genetic terms and concepts.

Tip #19 – Happy Thanksgiving!

Sent on 11/24/2011

Wishing you a Happy Thanksgiving from Genetic Alliance!

Just a reminder that Thanksgiving is National Family Health History Day. Check out the Does It Run In the Family?toolkit and the U.S. Surgeon General's My Family Health Portrait for tools to help make talking about family health history a new Thanksgiving tradition!

Tip #20 – Evaluating Information

Sent on 12/15/2011

Health information is plentiful and available from a variety of sources, including the Internet, journal articles, magazines, medical professionals, and friends and family. But how do we know that the information provided is accurate? How do we know the information is trustworthy?

One strategy is to use Genetic Alliance's Trust it or Trash it? tool to ask the following questions:

• Who said it? – If it's a written piece, it's important to consider who wrote it, where the facts came from, and who paid for it.
• When did they say it? – It's also important to know when something was written or updated, especially in fields that change very quickly.
• How did they know? – It's also relevant to determine if the information pertains to you, and if it seems reasonable based on what you already know.

While the Trust it or Trash it? tool was designed to evaluate written information, it can also be modified to evaluate conversations you have with others. Remember, if it sounds too good to be true, it probably is.

Tip #21 – Learn more about GINA

Sent on 1/12/2012

The Genetic Information Nondiscrimination Act (GINA) is a federal law that protects individuals from genetic discrimination (i.e. being treated unfairly because of differences in their DNA that increase their risk for disease). Enacted in 2008, GINA protects from genetic discrimination in insurance and employment.

Interested in learning more about GINA and its protections? Here are two great resources to help you learn about how GINA affects you:

• GINAhelp.org—An introduction to GINA and answers to common questions
• The Genetic Nondiscrimination Act In Action—A Genetic Alliance webinar that explains GINA and gives case examples for applying GINA to rare diseases

Tip #22 – Improving effective communication in hospitals

Sent on 1/19/2012

In order for a hospital to meet the unique needs of each patient, family, and community served, a hospital must embed effective communication, cultural competence, and patient- and family-centered care practices into their organization.

The Roadmap for Hospitals tool provides methods, recommendations, and practice examples for how hospitals can begin and continue to integrate these concepts into their care delivery system. A robust resource chapter provides additional tools for addressing patients with special healthcare needs. Addressing components along the care continuum (e.g. admission, treatment, and end-of-life care) ensures all patients receive high quality care.

Tip #23 – Participating in clinical research

Sent on 2/2/2012

Choosing to participate in clinical research is an important personal decision, so you should understand the benefits and risks before agreeing to be part of any study. For example, participating in research often gives you access to an experimental treatment before it is widely available. However, because the treatment is new, the effects might not be well understood. Who is in charge of the study? What is the study trying to find out? What will be expected of you? It is important to get the answers to these and other questions to fully understand the study and how it could impact you. The Mayo Clinic offers a list of questions to ask before participating in clinical research.

For more information, check out these resources:

• Why do people choose to participate in research? The National Institute of Mental Health provides some answers using a helpful comparison between participating in clinical research and seeing your doctor.
• How is the safety of the participant protected? ClinicalTrials.gov answers this and other frequently asked questions about clinical research studies.

Tip #24 – Celebrate Rare Disease Day

Sent on 2/23/2012

Currently there are close to 8000 known rare diseases, each affecting less than 200,000 Americans. Although most of these diseases are not well understood, tremendous progress is being made every day, thanks to the increase of collaboration in disease advocacy communities.

February 29, 2012 marks the fifth global Rare Disease Day, filled with activities and events converging around this year's theme, "Rare But Strong Together." This focus on solidarity within the rare disease community emphasizes the need for continued collaboration and mutual support across diseases, organizations, and the world.

Visit Rare Disease Day USA to learn how you and your organization can participate in Rare Disease Day.

Tip #25 – Keeping Track of Healthcare Information

Sent on 3/15/2012

It's time for Spring cleaning again! Are you ready to conquer those piles of papers and documents? Managing your healthcare information can be challenging. Here are a few tips for keeping yourself and these documents organized:

• Take time to gather all of your healthcare information together
• Sort your information into piles—insurance statements, doctor's office bills, medications/pharmacy receipts, etc.
• Place sorted information into labeled folders
• Add new information to the folders when you receive it.
• Keep digital copies of important documents—scan or take a picture with your smartphone

Visit "Keeping Track of your Health Care Information" for more tips!

Tip #26 – Women's Health Week

Sent on 5/10/2012

This week is the 13th National Women’s Health Week! Women often serve as caregivers for their families, putting the needs of their spouses, children, and parents before their own.

National Women’s Health week works to empower women to take steps to make their health a top priority by encouraging women to:

• Get at least 2 hours and 30 minutes of moderate physical activity, or 1 hour and 15 minutes of vigorous physical activity each week
• Eat a nutritious diet
• Visit a healthcare professional to receive regular checkups and preventive screenings
• Avoid risky behaviors, such as smoking or not wearing a seatbelt
• Pay attention to mental health by getting enough sleep and managing stress

For more information on how to support the women in your life as they take steps toward longer, healthier lives, visit the National Women's Health Week Website

Tip #27 – Getting the most from your insurance

Sent on 5/17/2012

Handling insurance is challenging for anyone, but it is especially complex for families with children with special healthcare needs. Here are some basic tips for better understanding and interacting with your child’s insurance.

• Identify the effective dates of your child’s coverage and how long your child is covered on your plan
• Know what your insurance covers by keeping a copy of your plan documents
• Find out how to review claims with your insurance providers. Do they mail statements or can you check claims online?
• Keep all insurance documents, including explanation of benefit (EOB) statements, prior approval letters, letters you write, and receipts

For more tips on navigating copays, prior approvals, Medicaid, and insurance appeals visit getting the most from your insurance

Tip #28 – New NASDE Resource

Sent on 6/7/2012

The National Association of State Directors of Special Education (NASDSE) recently released a comprehensive summary of special education legal decisions: A National Update of Case Law 1998 to the Present under the IDEA and Section 504/A.D.A. This resource focuses on decisions made under the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Americans with Disabilities Act (ADA) for students from pre-K through grade 12 from 1998 to mid-2011. Issues covered relevant to both educators and parents include:

• Eligibility
• Free appropriate public education (FAPE)
• Least restrictive environment (LRE)
• Remedies of tuition reimbursement and compensatory education

If you are interested in legal issues and special education, dive in! However, the resource is not intended to be legal advice for the reader.

Tip #29 – Rare disease curriculum for middle school

Sent on 8/23/2012

The National Institutes of Health created a supplementalcurriculum is free, and a teacher’s guide is coming soon.

Tip #30 – Research Advocacy Network

Sent on 9/20/2012

Research Advocacy Networkhelps advance patient-focused research by developing partnerships among advocates, researchers, and related organizations. RAN is a collaborative organization that cultivates this network, equips advocates to effect change, and mobilizes people around issues of patient-focused research. In order to do so, they developed materials to help advocates understand concepts and processes in research. The network focuses on cancer, but their methods are easily applicable to other conditions. If you're interested in research advocacy,get involved by joining their network.

Tip #31 – Happy Family Health History Day

Sent on 11/15/2012

Happy family health history month! Do you know your family health history? Check out these cool and easy-to-use tools: the Does It Run In The Family?toolkit and the U.S. Surgeon General’s My Family Health Portrait can help you figure out who and what to ask about your family's health history, and they provide easy ways of organizing all of the information!

Tip #32 – Emergency Preparedness and Response

As the winter storm season approaches and hurricane season comes to a close, it is essential to be equipped to handle an emergency like Hurricane Sandy or the nor’easter predicted to hit the Atlantic Coast this week. Visit the Centers for Disease Control and Prevention’s page on hurricane preparedness before a storm hits; it offers quick links to helpful articles covering topics such as emergency supplies and evacuation preparation. Ready.gov is also a great resource for information on how to prepare for natural disasters and other hazards.

During a storm, Family to Family Health Information Centers in your area are available to help families of children with disabilities and special healthcare needs connect to local rescue operations and agencies like the Federal Emergency Management Agency and the Red Cross.

Finally, coping with the aftermath of a storm may be stressful, but there are many organizations and government agencies to help with the recovery process. If you want to help, FEMA provides tips and links to http://www.fema.gov/volunteer-donate-responsibly " target="_blank">donate and volunteer responsibly.

Tip #33 – Weekly Tips Survey

Sent on 11/29/2012

Thank you for subscribing to our Weekly Advocates Tips. We want to know what you like about our tips, and what you think we could do to improve them. Please consider taking the time to complete an evaluation to help us improve our weekly tip series. We value your feedback!

Tip #34 – Managing Holiday Stress

Sent on 12/06/2012

The holiday season is approaching, and we all know this time of year can be stressful. Whether it's a big deadline at work or an overwhelming experience with families, these helpful tips can help you stay calm and jolly during the holidays:

• As hard as it may be, try to keep a positive attitude. If you put on a happy face, before you know it, you just might feel happier!
• Be assertive instead of aggressive. Assert your feelings, opinions, or beliefs instead of becoming angry, defensive, or passive.
• Learn and practice relaxation techniques; try meditation, yoga, or tai-chi.
• Exercise regularly. Your body can fight stress better when it is fit.
• Eat healthy, well-balanced meals.
• Take "me time." Make time for your personal hobbies and interests.
• Get enough rest and sleep. Your body needs time to recover from stressful events.

Tip #35 – Culturally Diverse Health and Wellness Videos

Sent on 01/03/2013

For Me, For Us is a series of videos that promote healthy living for people of diverse cultures and backgrounds. Videos cover topics such as healthy weight, access to healthcare, and healthy births. They are available in multiple languages (English, Spanish, Tongan, Samoan) and are culture-specific: you'll find versions for African Americans, Hispanics/Latinos, and Pacific Islanders. Videos were filmed in Utah with local community members, so they are conversational and relatable.

Watch and share these videos created in partnership with local community-based organizations

Tip #36 – Parent Advisors

Sent on 01/31/2013

The Federation for Children with Special Needs has a group of Parent Advisors who share their experiences with other families that have similar situations. Parent Advisors take their experiences to a higher level in guiding the development of services for other children and families. Parent Advisors help create informed decision-making processes for community, state, and federal agencies that provide services to enhance the lives of children with disabilities. Depending on your interest and availability, there are many ways you to get involved as a Parent Advisor. You can learn about and share networks related to your child's disability, or join a Parent Advisory Group.These groups help to inform local and statewide services. Or, you could join a national network that brings support to a disease on a national level.

For more info click here.

Tip #37 – Equality in Learning with the 504 Plan

Sent on 02/14/2013

All children deserve a good education and an inclusive, age- and ability-appropriate school experience. Individualized Education Programs (IEPs) and 504 Plans are two means for ensuring that children with special needs receive any special instruction and related services they need to access the learning environment and achieve academic success. Students, parents, and teachers should work together to write IEPs that target students’ full participation in inclusive general education classrooms and specify the supports needed for success. To learn more about how to write such an IEP, sign up for Creating Inclusive IEPs. This webinar from the University of New Hampshire Institute on Disability, takes place next Wednesday, February 20, at 3:30 - 5:00 PM ET. Examples of elementary and secondary school IEPs will be provided. While the IEP focuses on appropriate instruction, 504 Plans focus on accommodations. Depending on your child’s needs, these may include wheel-chair accessibility, technological assistance, and long-term absences. For an example 504 Plan template, check out the 504 Plan template from the Crohn’s & Colitis Foundation of America. It was designed for children with inflammatory bowel disease but can be applied more generally to children diagnosed with other conditions.

For more info click here.

Tip #38 – Recycling and Reusing medication and supplies

Sent on 02/21/2013

As pharmaceutical technology advances and prescriptions change over time, a large supply of medical equipment and medications are left as waste. To dispose of these unwanted medications, people may dump them in landfills or flush them down toilets, which negatively impact public health and the environment. Rather than throwing medications away, consider donating leftover medications to organizations like Project C.U.R.E., Globus Relief, and Medical Bridges that distribute medications internationally. Operation USA distributes medical supplies both domestically and internationally. For more information read Siri Vaeth-Dunn’s article “What To Do With Excess Medications and Supplies? Recycling and Disposal Options” in the Summer 2012 issue of CFRI News.

To read click here.

Tip #39 – The Maternal and Child Health Library at Georgetown University

Sent on 02/28/2013

The MCH Library houses a collection of historical documents and reports related to maternal and child health in the United States and health services for children and families. MCH Library provides leadership and state-of-the-art knowledge related to MCH issues to help federal, state, and local policymakers, public health professionals, and the public make informed decisions about MCH services, programs, and policies. The MCH Library publishes the MCH Alert; produces databases; develops knowledge paths, family resource briefs, bibliographies, and other information resources; maintains the website to provide access to key MCH-related data and information; and promotes the awareness and use of MCH information.

For more info click here.

Tip #1 – Find great guest speakers

Many times one organization asks another for speaker recommendations on a particular topic. Help us gather all of that information in a single place by posting the names and contact information for great speakers you know in the WikiAdvocacy Speakers Bureau.

A small investment of your time now will pay off big when you sit down to plan your next conference and have an easily accessible list of speakers to reach out to already generated!

Tip #2 – Create an effective brochure

Your brochure may be the first thing a potential member or donor sees about your organization. An effective brochure is informative, attractive, and easy to read. Whether you plan to print thousands of glossy pamphlets designed by a professional or a black and white brochure produced at home, a few basic steps will help make your brochure successful. To learn helpful tips, download the newly revised how-to guide on Creating Effective Brochures: A Guide for Content and Presentation from the Resource Repository.

Tip #3 – Attend and host conferences for your community

To learn tips from other members of the advocacy community, check out the conference page in WikiAdvocacy. As you plan your own conference and discover other best practices, please share them with the community through this great resource!

Additionally, if you’d like to have your conference included on our Calendar of Upcoming Events, please send the event title, date, location, and contact information to info@geneticalliance.org. You can access the calendar here: http://www.geneticalliance.org/events

Tip #4 – Reach out with social media

The presence and utility of social media tools continues to grow and grow. Facebook, Twitter, Linked In...where do you begin?

Genetic Alliance has started a page on Social Networking on WikiAdvocacy which is a good place to get started AND share your wisdom! Additionally, The Case Foundation has also created many tutorials which may be of interest.

If you’d like to see some examples, here are links to some of Genetic Alliance’s pages:

Facebook: http://www.facebook.com/group.php?gid=15453400385&ref=ts
LinkedIn: http://www.linkedin.com/companies/genetic-alliance
Twitter: http://twitter.com/geneticalliance
YouTube: http://www.youtube.com/geneticalliance

Tip #5 – Share your knowledge on WikiAdvocacy

As an unmatched resource, WikiAdvocacy was created for the community to share our collective knowledge about starting and sustaining advocacy organizations.

The original basis of WikiAdvocacy was the Interactive Guide to Advocacy by Sharon F. Terry, President and CEO of Genetic Alliance. The Interactive Guide to Advocacy covered many aspects of founding and managing the growth of an advocacy organization, from fundraising to detailed explanations of issues, skills, and elements of creating a registry and samples repository. It was moved to an online format so that the collective wisdom of the community can be shared in a more dynamic way. It is not complete and thus, we welcome your edits, additions, and updates based on your own experience.

Browse through WikiAdvocacy to find the answers to your questions or edit the Wiki to add in your experiences! Check back often to see what’s been added.

Tip #6 – Become a Genetic Alliance “neighbor”

Want a new way to get information about your organization out to others? Have a great resource that you want highlighted within the genetics community? Sign up to be a featured Genetic Alliance “neighbor” by completing this survey.

Each week, Genetic Alliance features a different organization on the front page of our website and in our Weekly Bulletin to familiarize people with the various stakeholders in our extensive network. We invite you to become a Genetic Alliance “neighbor”! Our “neighbors” are disease-specific organizations, professional societies, government agencies, and more!

Tip #7 – Provide high-quality information resources

One of the main services advocacy organizations offer to their members is providing quality and accurate information about a condition as well as helping people sort through health information found from other sources.

Help ensure your organization’s materials are of the highest standards by creating or updating them with the assistance of the developer’s version of the Trust It or Trash It? tool.

Your members may have many places they find information other than your organization. Encourage them to use the Trust It or Trash It? tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more, watch this short video.

Tip #8 – Use volunteers in your community

Especially in today’s economic situation, the work provided by volunteers is appreciated even more! How does your organization use volunteers? Are your volunteers local to your office, or do you have some that help you remotely?

All of us utilize volunteers in various ways! Share your tips, tricks, and lessons learned in WikiAdvocacy's volunteer page.

Tip #9 – Learn the laws about using volunteers

Many of us utilize volunteers to help us accomplish the work of our organizations. A few people have raised questions about the liability laws related to volunteers. This report breaks down the laws by state.

Tip #10 – Create a culturally competent community

As our population becomes more diverse, it’s critical that individuals understand the needs and ways of other cultures. In order to increase your cultural competence, visit the sites below to find information that may help you, individuals in your organization, or the healthcare professionals you work with.

Advancing Effective Communication, Cultural Competence, and Patient-and Family-Centered Care: A roadmap for hospitals

Cultural Competency resources provided by The Office of Minority Health

Cultural Competency resources provided by the Health Resources and Services Administration

National Center for Cultural Competence

Tip #11 – Mix up your meetings

Many advocacy organizations offer annual conferences for the individuals in their communities, which might include individuals with a genetic condition, their family members, researchers, and healthcare providers. However, sometimes other formats are utilized to address a certain topic or infuse new energy. Has your organization tried a new or unique format for a meeting (of any length)?

Check out the Novel Meeting Format on WikiAdvocacy to learn more about flash mobs and then share your other creative, successful ideas!

Tip #12 – Craft catchy speeches

Whether it's to increase awareness of your organization or to seek funding, it's important to be able to offer a quick sound bite about your organization that will capture an individual's attention. Creating these short speeches can often be a challenge! Check out these tips crafted by the Pepsi Refresh project.

Tip #13 – Start a Twitter account

For many, the idea of creating a Twitter account is daunting. After all, what would you say? Once you have a Twitter account, keeping up with it can seem like a lot of work as it requires a whole new strategy. You have to convey your message in 140 characters or less. To read some tips and about how a company handled a mistake, read this article.

Do you have other great social media resources? Add them to the Social Networking page of WikiAdvocacy.

Tip #14 – Gain skills for working with partners and stakeholders

Below is a shortened version of a press release describing a toolkit developed by the International Alliance of Patients’ Organizations and other partners earlier this year.

“Working with partners and stakeholders” is a user-friendly toolkit for all patient organizations, large and small. It provides guidance and best practice examples of how patient organizations can develop effective, long-term partnerships with a range of stakeholders. The toolkit also provides tips and information to help with some of the challenges that can occur when working with external partners. Additionally, there are materials to assist organizations in developing their infrastructure and capabilities, as well as guidance on core skills and activities. Areas covered include raising disease awareness, advocacy, strategic planning, fundraising and effective communication.

Please visit the toolkit today to see how the materials and tools included in “Working with partners and stakeholders” can assist you in developing your organization’s infrastructure and capabilities, as well as further enhancing your relationships with key stakeholders. The toolkit is freely available to all patient organizations from across the world, whether or not they are members of the International Alliance of Patients’ Organizations (IAPO). If you have any comments, questions or require assistance on how to use the toolkit, please send an email to toolkit@patientsorganizations.org.

Tip #15 – Move to the top of the list on Google

Search engine optimization can make it easier for others to find your website. This is especially important if you want to make it easier for others to find the information that you offer!

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites. Learn more by visiting the section on WikiAdvocacy.

Tip #16 – Planning for your organization's stability

In a time where financial resources seem scarce, planning for the future is a topic on every organization’s mind. The National Federation of Families for Children's Mental Health recently released their latest publication entitled The Road to Sustainability Is Paved with Broad Stakeholder Involvement, Collaboration and Data-Driven Decision Making. This workbook is designed to provide direction to family-run organizations on sustainability planning.

Tip #17 – The National Center for Cultural Competence

Sent on 12/8/2011

The National Center for Cultural Competence (NCCC) is dedicated to increasing the capacity of healthcare and mental healthcare programs to design, implement, and evaluate culturally and linguistically competent services.  

The NCCC's major efforts are in the following areas:

• Creating tools for measuring and assessing cultural and linguistic competency
• Producing training and resources for healthcare providers
• Publishing documents to advance knowledge of cultural and linguistic competency
• Developing policies on cultural competence within health, mental health, social services, and education

To learn more, visit their website or view their resources and publications.

Tip #18 – Evaluating potential partnerships

Sent on 2/9/2012

Today, more than ever, collaboration is invaluable for individuals, organizations, and communities; it can help us achieve more with less and broaden our reach. Partnerships have amazing potential, and it´s important to evaluate each potential partnership.

When approached by a potential partner, consider the following:

• What is involved? – What is the potential partner asking of your organization? What is the outcome? What are the deliverables? What resources are involved (time, money, personnel, and organizational/personal capital)? Are roles and responsibilities clear?
• What is the benefit? – How will both parties benefit? Can you articulate the value? What are the potential pitfalls? Is this something you can´t do or can´t do well without the partner?
• Is it strategic? – Do your missions align? Is this within the scope of your strategic plan? Is it a good opportunity? Does the partnership make sense?

Tip #19 – Technology resources and products

Sent on 3/8/2012

Need low-cost technology resources and products for your non-profit organization? TechSoup is dedicated to helping nonprofits with their technology needs, including offering substantially discounted software and technology products. All you need is to confirm your 501c3 status. Browse through the TechSoup Learning Center for helpful how-to articles, webinars, resources, and product comparisons covering website management, databases, security, hardware and software, and many other technology topics.

Tip #20 – Organizing Alliances

Sent on 01/17/2013

It is not always efficient to do things alone. This is especially true for non-profit organizations with limited resources. There are appropriate times to cooperate, collaborate, pull resources, and organize together. The Stanford Social Innovation Review has developed a two-part series on organizing alliances of multiple organizations, and suggests the following key elements:

• An executive council focused on the big picture
• A leadership team to develop the strategy
• Program management teams to implement the strategy
• Projects that are well-defined with clear deliverables
• Project work groups involving community members
• Support staff
• Clear mechanisms for community engagement

Additionally, all elements are connected by a culture of accountability.

If you would like to have a new tip emailed to you on a weekly basis, please send an email to Vaughn Edelson at vedelson@geneticalliance.org.