Meet Your Neighbor Archive
January 9, 2012: PXE International
Started in 1995 by parents with children newly diagnosed with Pseudoxanthoma Elasticum (PXE), PXE International is an advocacy organization working to support individuals, families, and clinicians of those affected by PXE. PXE International also strives to accelerate research of PXE by initiating, funding, and conducting research. PXE International serves as an excellent model for how advocacy groups can establish infrastructure to initiate, conduct, and accelerate research.
January 16, 2012: Genzyme
As one of the world's leading biotechnology companies, Genzyme is dedicated to making a major positive impact in the lives of people with serious diseases. Since it's founding in 1981, the company has worked to develop new medicines, improve existing therapies, and ensure that patients have access to these treatments. Genetic Alliance partnered with Genzyme to create resources for the Gaucher and Fabry disease communities on talking to your family about health.
January 23, 2012: The Progeria Research Foundation
The Progeria Research Foundation was established in 1999 by the family of a child with Progeria with the goal of discovering the causes, treatments, and cure for Progeria. Since then, the foundation has made extraordinary progress toward their mission, including discovering the Progeria gene in 2003, initiating the first-ever clinical trials in 2007, and researching the link between Progeria, heart disease, and the aging we all experience.
January 30, 2012: Shire
As one of the world's leading specialty biopharmaceutical companies, Shire is a company focused on a single purpose: to enable people with life-altering conditions to lead better lives. Founded in 1986, Shire is organized into two divisions, the specialty Pharmaceuticals division, focusing on small-molecule medications, and the Human Genetic Therapies division, focusing on treatments for single mutation genetic diseases.
February 6, 2012: 23andMe
23andMe's mission is to be the world's trusted source of personal genetic information. The company was started in 2006, when the two founders were frustrated at the pace of genetic research and the ability to translate that research into personalized medicine. Giving consumers the opportunity to access and understand their genetic information and directly participate in research changes the way genetic research is conducted and its utility for the general public. With the introduction of a program called 23andWe, customers can join an effort to translate basic research into improved health care for everyone through contributing their data to genetic studies. Recently, 23andMe announced that is has built one of the world's largest databases of individual genetic information, including the DNA from more than 100,000 people.
February 13, 2012: Genetics Home Reference
Leaders from research, medicine, academia, education, labor, business, health care, and policy have joined together to form the Council for American Medical Innovation, a partnership aimed at urging Congress to adopt a national policy agenda on medical innovation. Specifically the council is working toward policies that expand involvement in research development and application, increase investment in life science education, and ensure a highly skilled work force in the United States.
February 20, 2012: Illumina
Illumina is a leading developer, manufacturer, and marketer of life science tools and integrated systems for large-scale analysis of genetic variation and function. With the goal of improving human health by accelerating the collection, analysis, and application of biological information, Illumina offers array-based solutions for DNA, RNA, and protein analysis, helping to make the realization of personalized medicine possible.
February 27, 2012: Council for American Medical Innovation
Leaders from research, medicine, academia, education, labor, business, health care, and policy have joined together to form the Council for American Medical Innovation, a partnership aimed at urging Congress to adopt a national policy agenda on medical innovation. Specifically the council is working toward policies that expand involvement in research development and application, increase investment in life science education, and ensure a highly skilled work force in the United States.
March 5, 2012: CISCRP
The Center for Information and Study on Clinical Research Participation (CISCRP) is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process.
March 12, 2012: Aaron's Ohtahara
Aaron's Ohtahara was founded in 2010 by the parents of a child, Aaron, who was diagnosed with Ohtahara Syndrome. Their mission is to establish relationships with families that have children with Ohtahara Syndrome and to provide resources, support, and information to communities worldwide about Ohtahara Syndrome. The outreach of Aaron's Ohtahara is growing, and the organization hopes to be involved with ongoing research into Ohtahara Syndrome.
March 19, 2012: American Academy of Pediatrics
The American Academy of Pediatrics (AAP) works with a network of more than 60,000 providers to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. One of AAP's main child health priorities for 2011-2012 is epigenetics. Join AAP on Tuesday, March 20 at 1pm ET for the webinar Time Out for Genetics: Integrating Genetics into Primary Care – Why Does It Matter?
March 26, 2012: Genetic Alliance BioBank
Genetic Alliance Registry and BioBank is a centralized, clinical data registry and sample repository that enables translational research. Founded in 2003, this cooperative venture provides shared infrastructure and customized solutions for disease advocacy organizations to lead sophisticated research initiatives. It is governed by representatives of the participating disease advocacy organizations and currently houses more than 25,000 samples and thousands of clinical records.
April 2, 2012: ARPkD/CHF Alliance
The ARPKD/CHF Alliance is a nonprofit organization dedicated the Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis (CHF) communities. Established in 2001, the mission of the alliance is to educate, advocate, support, and advance research specific to ARPKD/CHF. The ARPKD/CHF Alliance has greatly surpassed its original goal of increased awareness of ARPKD/CHF and generated the largest research study to date for the ARPKD/CHF community.
April 9, 2012: Trimethylaminuria Foundation
The purpose of the Trimethylaminuria (TMAU) Foundation is to provide education, peer-support, and encouragement to research initiatives to discover treatments and a cure for TMA. The TMAU Foundation provides a variety of resources for the TMAU community including information about the disease, diagnosis, current research, and support groups.
April 16, 2012: GenomeWeb
Since 1997, GenomeWeb has operated the largest online news organization providing its readers with exclusive, in-depth coverage of the worldwide research enterprise of molecular biology. GenomeWeb serves a global community of scientists, technology professionals, and executives who use and develop the latest advanced tools in molecular biology research and molecular diagnostics
April 23, 2012: Organic Acidemia Association
The Organic Acidemia Association is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in Organic Acidemia metabolic disorders. The OAA supports early intervention through expanded newborn screening, solicits contributions, and distributes funding that supports research toward improved treatment and eventual cures in the area of Organic Acidemia disorders.
April 30, 2012: National Foundation for Ectodermal Dysplasias
Founded in 1981, the mission of the National Foundation for Ectodermal Dysplasias is to empower and connect people touched by Ectodermal Dysplasias through education, support, and research. Today more than 5,800 families in 72 countries are in touch with the Foundation, and the organization has funded more than $1 million in research for Ectodermal Dysplasias around the world.
2011 Neighbors
January 3, 2011: National Health Mothers, Health Babies Coalition
Text4baby is a free mobile health service for pregnant women and new moms. It is an initiative of the Healthy Mothers, Healthy Babies Coalition, whose mission is to improve the health and safety of mothers, babies and families through educational materials and collaborative partnerships. Through Text4baby, women get three free messages per week on their cell phone with tips for their stage of pregnancy. Sign up by texting BABY to 511411.
January 10, 2011: Intermountain PKU and Allied Disorders Association
The mission of Intermountain PKU and Allied Disorders is to provide support and services to individuals and families with PKU and allied disorders, to encourage research, and to increase awareness of these conditions. IPAD started with a small group - parents, individuals, and professionals - dedicated to making a difference in the lives of people with PKU and allied disorders who live in the Intermountain West. Two years since IPAD started, they've hosted many education and support events and developed a significant presence in the community.
January 17, 2011: Midwest Women's Vascular Advocates
The Midwest Woman’s Vascular Advocates is a group of women diagnosed with FMD a non-inflammatory vascular disease. MWVA offers emotional support to those diagnosed with non-inflammatory vascular diseases and their families. Their mission is to support and educate women affected by FMD and non-inflammatory vascular diseases. Their goal is for each person to feel safe and welcome.
January 24, 2011: Cystinosis Research Network
The Cystinosis Research Network is a volunteer, nonprofit organization dedicated to supporting and advocating research, providing family assistance, and educating the public and medical communities about cystinosis. Join them at their Family Conference July 14-16, 2011, in San Francisco, CA.
January 31, 2011: March of Dimes
March of Dimes helps moms have full-term pregnancies and researches the problems that threaten the health of babies. Genetic Alliance and March of Dimes are currently partnering on a project to develop a prenatal family health history and screening questionnaire.
February 7, 2011: MLD Foundation
The MLD Foundation began due to a large amount of family support, with the goal of influencing research and advocacy. They "C.A.R.E" for people and families with MLD by facilitating Compassion, increasing Awareness, funding and influencing Research, and promoting Education about MLD.
February 14, 2011: Lettercase
Lettercase began with an array of community leaders with different strengths who were committed to providing information about prenatally diagnosed conditions. The organization seeks to provide reliable and up-to-date printed and digital resources and information about genetic conditions, as well as to provide professional and academic training about disabilities.
February 21, 2011: Baylor College of Medicine
The Baylor College of Medicine seminar series titled "Evening Genetics" was started in 2006, with the goal of offering families, health care providers and other members of the community a forum for discussion about genetic disorders. They have a large number of genetic speciaists on their staff who are ready and willing to educate the community about genetics and genomics. They offer free monthly seminars on various genetics based topics.
March 7, 2011: Sage Bionetworks
Sage Bionetworks is a new medical research organization that accomplishes its work through partnerships and has three primary activities: 1) actively collaborate with a number of academic and commercial partners to apply advanced integrative genomic analysis to genetic and clinical datasets; 2) provide training for interdisciplinary researchers to gain next generation bioinformatics skills that is the focus of a new National Cancer Institute Center for Cancer Systems Biology; 3) catalyze and coordinate the development of a major new biological network and systems biology resource, the Sage Commons. Sage President, Co-founder, and Director Stephen Friend is part of the Genetic Alliance Innovator Series.
March 14, 2011: Spectrum
Spectrum is a full-service communications agency that specializes in science and health. Spectrum began in 1996 as public relations specialists in the healthcare industry but soon expanded to handle more of their clients' communications needs, now including media and public relations, public affairs, advocacy and regulatory affairs, branding, and digital communications. A team of science, health, and communications experts works in collaboration to help ensure their clients' success. 2011 Genetic Alliance Art of Reporting Awardee John Seng is founder and president of Spectrum.
March 21, 2011: Broad Institute
The Broad Institute brings together a diverse group of individuals from across its partner institutions (MIT, Harvard Univeristy, and Harvard-affiliated hospitals) to tackle critical problems in human biology and disease. The Broad Institute is essentially an “experiment” in a new way of doing science, empowering this generation of researchers to act nimbly, work boldly, share openly, and reach globally. Broad Institute Founding Director Eric Lander is part of the Genetic Alliance Innovator Video Series.
March 28, 2011: Linda Crnic Institute for Down Syndrome (LCI)
The mission of the Linda Crinc Institute is to significantly improve the lives of all people with Down syndrome and to eradicate the ill effects associated with Down syndrome. Join them in Washington, DC, on May 12 to honor legislators who have been advocates for the civil rights of individuals with Down syndrome.
April 4, 2011: Organic Acidemia Associatio
The Organic Acidemia Association is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. The OAA supports early intervention through expanded newborn screening, solicits contributions and distributes funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.
April 18, 2011: GAPPNet
The Genomic Applications in Practice and Prevention Network (GAPPNet™) is a collaborative initiative involving diverse stakeholder organizations who are working together to realize the promise of genomics in healthcare and disease prevention. GAPPNet was formed by CDC’s Office of Public Health Genomics, NCI’s Division of Cancer Control and Population Sciences, and other stakeholders in 2009. GAPPNet Co-Chairperson Muin Khoury is part of the Genetic Alliance Innovator Video Series.
April 11, 2011: Alpha-1 Association
Alpha-1 Association was founded in 1991 to identify those affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the quality of their lives through support, education, advocacy, and encouragement of participation in research. It is estimated that 95% of patients are undiagnosed, so a challenge for the organization is to increase the level of awareness about the condition. The 2011 Genetic Alliance Art of Advocacy Awardee, Dennis Pollock, was an active force in the Alpha-1 community.
April 25, 2011: Getting Genetics Done
The "Getting Genetics Done" blog serves as an online resource for human genetics researchers who are doing research on a day to day basis. It focuses on the mundane yet critical know-how for those actually on the ground conducting the research. It brings to light specific software, code snippets, literature of interest, workflow philosophy, and anything between that boost productivity and simplify the human genetics research process.
May 2, 2011: Healthcare Information Technology Standards Panel (HITSP)
The Healthcare Information Technology Standards Panel (HITSP) is a cooperative partnership between the public and private sectors. The Panel was formed for the purpose of harmonizing and integrating standards that will meet clinical and business needs for sharing information among organizations and systems. HITSP Chair John Halamka is part of the Genetic Alliance Innovator Video Series.
May 9, 2011: ISBER
The International Society for Biological and Environmental Repositories (ISBER) is the only international forum that addresses the technical, legal, ethical, and managerial issues relevant to repositories of biological and environmental specimens. ISBER’s vision is to be the leading international forum for promoting consistent, high quality standards, ethical principles and innovation in biospecimen banking by uniting the global biobanking community.
May 16, 2011: Soaringwords, Inc.
Each year, 22 million children in the U.S. suffer from chronic or serious illness. Soaringwords’ mission is to lessen the negative impact of serious illness by connecting ill children and their families to a community of compassionate and caring volunteers who inspire them to “Never give up!” Soaringwords embraces these children and their families by providing fun, creative and educational activities, both in person and online, which cultivate joy, hope, laughter and healing.
May 23, 2011: National Center for Hearing Assessment and Management
The National Center for Hearing Assessment and Management (NCHAM) aims to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention. To help reach this goal, NCHAM promotes the use of hearing screening in Part C early intervention programs and conducts learning communities to support telehealth and cultural competence.
May 30, 2011: Direct Health Media
Direct Health Media (DHM) is a nonprofit corporation dedicated to educating patients, their families, and their caregivers about disease-specific issues and related topics and believes that patients and healthcare consumers have the right to receive educational resources free-of-charge. DHM produces unbiased, noncommercial, state-of-the-art healthcare information via all electronic media and is currently planning a patient advocate kit and numerous productions related to chronic diseases.
June 7, 2011: National CMT Resource Center
The National CMT Resource Center promotes the health and well-being of people living with Charcot-Marie-Tooth disease by providing comprehensive information, resources, education, and support to a vast audience of people living with CMT, their caregivers, and a wide range of health care professionals. The Center is brought to you by the Hereditary Neuropathy Foundation, a non-profit 501(c)3 organization that raises awareness, funds scientific research, and educates the medical community as well as the general public about CMT.
June 27, 2011: Siouxland Community Health Center
Siouxland Community Health Center (SCHC) is a federally qualified health center located in Sioux City, IA, that was founded in 1991 to address the unmet healthcare needs for those most underserved in the community. The mission of SCHC is to provide primary healthcare that eliminates access barriers and improves the health of the Siouxland community. SCHC is a Genetic Alliance partner on a new project to implent the Does It Run In the Family? toolkit and integrate family health history awareness and education in health centers.
July 4, 2011: M-CM Network
The mission of the M-CM network is to simply improve the lives of families dealing with macrocephaly-capillary malformation syndrome. We believe that the best way to do that at this time is to establish and maintain a disease registry so that the natural history of M-CM can be better understood.
July 11, 2011: Madison County Community Health Centers, Inc.
Madison County Community Health Cetners, Inc. (MCCHC), founded in 1999, exists to improve the quality of life for all persons in Madison County, IN, by providing accessible comprehensive primary healthcare (medical, dental, behavioral, and optical) for those who experience health disparities for any reason, especially the uninsured, underinsured, Medicare and Medicaid recipients, and the working poor. MCCHC is a Genetic Alliance partner on a new project to implent the Does It Run In the Family? toolkit and integrate family health history awareness and education in federally-funded health centers.
July 18, 2011: Muscular Dystrophy Foundation India
MDF INDIA envisions a society wherein Muscular Dystrophy (MD) patients, particularly the children and their families do not perceive MD as a threat to normal life. Our mission is to ensure that MD patients in India enjoy equal opportunities.
July 25, 2011: Covenant Community Health Center/Beaumont Hospitals
The Covenant Community Care Center is a nonprofit, faith-based organization dedicated to providing healthcare to the people who need it the most. Beaumont Hospitals partnered with Covenant Community Care to establish a clinic in Royal Oak, MI, in 2010. Beaumont and Covenant are collaborating with Genetic Alliance on a new project to implent the Does It Run In the Family? toolkit and integrate family health history awareness and education in fedearlly-funded health centers.
August 1, 2011: Got Transition National Health Care Transition Center
Got Transition National Health Care Transition Center is a National Center that follows Healthy and Ready to Work (HRTW) and focuses exclusively on health care transition in primary care medical homes and specialty settings for youth and young adults with special health care needs. Got Transition implements and disseminates health care transition best practices through the use of websites, webinars, Facebook, and other contemporary social media avenues.
August 8, 2011: Daily Planet
Since 1969, the Daily Planet Health Care for the Homeless program has provided an array of health and social services to the homeless, uninsured, and underserved populations of the Richmond, VA, metropolitan area. This federally qualified health center is well known in the community for providing indigent care in an urban setting. The Daily Planet is a Genetic Alliance partner on a new project to implent the Does It Run In the Family? toolkit and integrate family health history awareness and education in health centers.
August 15, 2011: El Camino Hospital
The mission of El Camino Hospital is to be an innovative, publicly accountable and locally controlled comprehensive health care organization that cares for the sick, relieves suffering, and provides quality, cost competitive services to improve the health and well being of our community.
August 22, 2011: Comprehensive Community Health Centers, Inc.
Comprehensive Community Health Centers, Inc. (CCHC) was founded in 2004 and operates four primary care clinics providing medical, dental, and some mental services to underserved people. It is one of the largest providers of community clinic services in Los Angeles County, CA. CCHC is a Genetic Alliance partner on a new project to implent the Does It Run In the Family? toolkit and integrate family health history awareness and education in health centers.
August 29, 2011: Novartis
Novartis wants to discover, develop, and successfully market innovative products to prevent and cure diseases, to ease suffering, and to enhance quality of life. Novartis achieves success through close collaboration with partners who share a common vision and complementary strengths.
September 5, 2011: Lanai Community Health Center
Lāna`i Community Health Center (LCHC) takes care of the Lana'i, HI, community with a focus on physical, mental, emotional, intellectua,l and spiritual welfare. LCHC provides primary care, dental, and behavioral health services; collaborates with local and off-island organizations to offer activities; and hosts partners who can provide needed services for Lāna`i. LCHC is a Genetic Alliance partner on a new project to implent the Does It Run In the Family? toolkit and integrate family health history awareness and education in federally-funded health centers.
September 19, 2011: ProjectMiso
ProjectMiso is a one-stop new media studio with core services in strategic planning and system analysis, systems architecture development, custom application and software development, rich media and multimedia production, brand development and creative design. ProjectMiso helps clients accomplish more than simply communicating a message, allowing them to connect with their audience on a deeper level that inspires opinions and motivates impressions.
September 26, 2011: Bowen McCauley Dance
Bowen McCauley Dance educates, entertains, and inspires by making contemporary dance accessible to all through performances and outreach activities. BMD also offers Dance for PD: free weekly classes for people with Parkinson's disease and their care-partners. Join BMD this weekend in DC for two special performances at Dance Place to kick off their season!
October 3, 2011: Alpha-1 Foundation
Founded in 1995, the Alpha-1 Foundation is dedicated to providing leadership and resources aiming to increase research, advance worldwide detection, and find a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1). The Foundation has invested more than $42 million to support Alpha-1 programs and research, conducted in nearly 90 institutions worldwide.
October 10, 2011: International Congress of Human Genetics
Hosted by the American Society of Human Genetics and organized on behalf of the International Federation of Human Genetics Societies, the International Congress of Human Genetics is the foremost meeting of the world human genetics community and is held every five years. Check out all that ICHG has to offer October 11-15 in Montreal, Canada.
October 17, 2011: CHDI Foundation
The CHDI foundation is a private, non-profit research organization with the mission of developing drugs that delay or slow the progression of Huntington’s disease. Working as a collaborative enabler, CDHI has established a network of nearly 500 scientists and encourages these researchers to develop practical ideas, useful research materials, and powerful technologies to advance research in the field of Huntington’s disease.
October 24, 2011: Genomic Medicine Institute at Geisinger Health Systems
The Genomic Medicine Institute at Geisinger Health Systems uses genomic medicine to study the effects of an individual’s genetic inheritance on his or her health, leading to innovative, personalized treatment strategies. In addition, the Geisinger Genomic Core houses the MyCode™ project, which is a biobank of nearly 60,000 samples from consenting Geisinger patients.
October 31, 2011: American Public Health Association
The American Public Health Association is the oldest, largest and most diverse organization of public health professionals in the world and has been working to improve public health since 1872. APHA aims to protect all Americans and their communities from preventable, serious health threats and strives to assure community-based health promotion and disease prevention activities and preventive health services are universally accessible. Visit Genetic Alliance this week at booth #2091 at the APHA meeting in Washington, DC.
November 7, 2011: Kleiner Perkins Caufield & Byers
Founded in 1972, Kleiner, Perkins, Caufield, and Byers is a world leading venture capital firm, building over 475 companies in the Information Technology, Greentech, Life Science, and Pharmaceutical sectors. As a whole, KPCB is committed to helping their companies succeed through a foundation of strategic alliances, partnership opportunities, and the sharing of insights to help build new ventures faster, broader, and with less risk.
November 14, 2011: Mohr Davidow
Mohr Davidow is a venture capital firm that invests in early stage technology companies. For over 28 years, Mohr Davidow has helped to build more than 250 startup companies with focus in information technology, life science and cleantech investment areas. Mohr Davidow is committed to innovation and being a strategic partner with the companies they work with.
November 21, 2011: National Center for Family Professional Partnerships (NCFPP)
The National Center for Family Professional Partnerships (NCFPP) provides leadership in helping families and professionals partner in decision-making by providing technical assistance to Family-to-Family Health Information Centers (F2F HICs), Family Voices State Affiliate Organizations, and other family leaders in the states and partnering with National Centers and other key stakeholders to improve family/professional partnership opportunities.
November 28, 2011: Moebius Syndrome Foundation
The Moebius Syndrome Foundation works tirelessly to provide information and support to individuals with Moebius syndrome and their families. Organized in 1994, the Moebius Syndrome Foundation also promotes greater awareness and understanding of Moebius syndrome and advocates for scientific research to advance diagnostics and treatment of Moebius syndrome and its associated conditions.
December 5, 2011: National Task Force for Early Identification of Childhood Neuromuscular Disorders
The National Task Force for Early Identification of Childhood Neuromuscular Disorders was formed to address the delay that families frequently experience between symptom onset and diagnosis of neuromuscular disorders. The Task Force aims to increase clinicians' awareness of peripheral neuromuscular disease as a cause of developmental delay in young children, and to help health care providers detect the early symptoms of neuromuscular disorders.
December 12, 2011: Office of Rare Diseases Research
Established in 1993 within the Office of the Director of the National Institutes of Health, the Office of Rare Disease Research (ORDR) serves as the federal focal point for biomedical research. The goals of ORDR are to stimulate and coordinate research and to provide information on rare diseases to respond to the needs of patients who have any one of the more than 6,800 rare diseases known today.
December 19, 2012: Amicus
Amicus Therapeutics, founded in 2002, is a biopharmaceutical company at the forefront of developing therapies for rare diseases. The Company is developing orally-administered, small molecule drugs called pharmacological chaperones for the treatment of a range of diseases. Amicus' reach is global, and the company regularly interacts with key leaders in the lysosomal storage disease community. In collaboration with GlaxoSmithKline Plc (GSK), Amicus' lead program migalastat HCl is in Phase 3 for the treatment of Fabry disease. As a company, Amicus believes in teamwork, in respect for each individual's contribution, and in constantly building momentum in the fight against rare diseases.
