Thursday, June 23, 2011 from 8:00am-5:00pm

Yes. All interested individuals must register by Friday, June 9 at 6:00 pm ET. This is to ensure that we have ordered sufficient meals for all attendees.

Genetic Alliance staff work to ensure that all registrants have the opportunity to meet with the offices of their elected officials, both in the House and the Senate. The earlier you register, the more likely it is that we can provide you with this opportunity.

If you are attending Genetics Day on the Hill as a part of the Annual Conference, there is no cost to attend, as it is built into the conference registration fee. If you are only attending Genetics Day, there is a $25 fee toward the trainings available, space, and two meals and snack provided. If this poses a hardship, please don’t hesitate to email Molly at mbrenner@geneticalliance.org.

The day will begin with a breakfast briefing on Capitol Hill, at the Reserve Officers Association (ROA) located at One Constitution Ave, NE. After the briefing, participants will meet with a series of staffers in the House and Senate office buildings before meeting again for lunch, and later, a debrief at ROA. Directions to ROA

The continental breakfast will begin at 8:00 am. A buffet lunch will be served at 12:15pm.  A snack will be served at the debrief, which begins at 4:15pm.

We will provide you with talking points via email in as far advance of Genetics Day as possible. We will also review these talking points with you the day of the event. But remember, this day is about YOU! It is about your experiences in health with your work, family, and community. Sharing those experiences will create the biggest impact.

Do your homework. Look up your Representative (at House.gov) and Senators (at Senate.gov) and learn about the issues important to them.

Every year Genetic Alliance designs a series of trainings to prepare Genetics Day on the Hill participants for visiting with Congressional offices. All Genetics Day on the Hill participants are strongly encouraged to participate in this series.

If you miss a webinar, don’t worry! We will have recordings of the webinar available in our webinar archives.

Advocacy in Genetics on Capitol Hill
Thursday, July 1, 2010 1
2:00 pm ET

In a special webinar designed for Genetics Day on the Hill 2010 participants, Genetic Alliance will host an educational session with national advisory and advocacy firm B&D Consulting to teach registrants the basics of meeting with Congressional Offices. The program will feature an overview of Congress and the legislative process, and leading consultants will share strategies for communicating with policymakers and making an impact on the issues of central interest to the genetics community. Sharon Terry, Genetic Alliance President & CEO, will provide insight into the Genetic Alliance advocacy experience and the significance of the genetics community coming together for a unique event like Genetics Day on the Hill. The program will conclude with a Q&A session between speakers and participants.

Public Access: Eliminating Barriers to Information
Tuesday, July 6, 2010
12:00 pm ET

Free, online public access to results of research funded by the federal government enables individuals and families to learn about and benefit from our nation’s investment in scientific research and integrate that knowledge for informed decision-making, while removing the financial burden of paying subscription fees to access scholarly journals.  The Federal Research Public Access Act, HR 5037 and S 1373, or FRPAA, expands the current National Institutes of Health Public Access Policy to 11 agencies conducting scientific research by requiring the release of research manuscripts resulting from extramural research funding online within six months after publication in a peer-reviewed journal. In addition to providing taxpayers with access to the results of federally funded research, the FRPAA would maximize discovery, use, and re-use of available research while eliminating the silos between stakeholders and systems.

Please join us for the second in a series of four webinars preceding the fifth annual Genetics Day on the Hill that will underscore the importance of free, online access to federally funded research and explain current legislative and White House initiatives to improve transparency and the informed decision-making capacity of researchers and families.

The Importance of Participation – Rethinking Clinical Trials

*This webinar is tentatively scheduled for Wednesday, July 7 at 12:00 pm ET. Please note that the date and time are subject to change based upon speaker availability. If it does change, it will be scheduled for a later date but still preceding Genetics Day on the Hill.

Enrolling individuals in clinical trials is a crucial part of the drug and test development process. To get treatments, you need people! In the US alone, billions of dollars a year are spent enrolling participants. Industry and academic health centers have learned the hard way that more money doesn’t equal greater success. Patient advocacy groups are realizing that they need to broaden their expertise in registries. But we need an even greater change – a culture shift, a revolution! We must rethink our strategies and stop throwing money at a problem that needs big change. Join us on Wednesday, July 7 to hear from major players in the clinical trials space and learn how you can make an impact at the 2010 Genetics Day on the Hill.

Genetic Testing Oversight
Thursday, July 8, 2010
12:00 pm ET

The central issue the genetics and health community will bring to congressional offices at the fifth annual Genetics Day on the Hill will be the oversight of genetic tests, and more specifically, the significance of establishing a mandatory registry of genetic tests. Join us for the fourth and final webinar in a series specially designed for Genetics Day on the Hill 2010 participants that will explore the current oversight mechanism for genetic diagnostic tests, details of the voluntary Genetic Testing Registry as announced by the National Institutes of Health in March of this year, and the role a mandatory registry would have in establishing a forward-looking oversight system.  Leading consultants in regulation of advanced diagnostics will discuss proposed legislative vehicles, including the Genomics and Personalized Medicine Act, HR 5440, to achieving oversight, including a mandatory registry, that is flexible, transparent, and balances safety, innovation, ethical and social issues, viability, and the risks and benefits of improved health.

To register for the webinars, please visit:
http://www.geneticalliance.org/webinars

If you are staying at the Bethesda North Marriott for the Genetic Alliance Annual Conference, Genetic Alliance staff will meet Genetics Day participants in the lobby of the hotel at 7:15am (they will be holding signs) and guide participants onto the metro and to the event location. If you are not staying in the conference hotel, directions to the Reserve Officers Association can be found here.

Please let Molly Brenner know as soon as possible (BEFORE the day of the event) when you will be arriving or leaving so she may inform your group leader. This is very important, as some group leaders may become concerned that they have lost a member of their group. Email Molly at mbrenner@geneticalliance.org. Group leaders are required to be present for the duration of the event.

On the day of the event, please call Andria on her cell phone at 202.966.5557 to inform her if you are running late.

Yes. We will have a large coat closet at ROA where Genetics Day participants can store small pieces of luggage and coats. Genetic Alliance staff will be present at the event location all day to keep and eye on your stuff!

Comfortable shoes! You will walk multiple blocks throughout the duration of the event. Business casual dress is appropriate for this event.

Because the majority of the day is spent in small group collaborations or on Congressional office visits, Genetics Day will not be recorded or webcasted. We will be taking photos throughout the event to make a slideshow of the event available in the weeks following the event.

No.  Genetic Alliance will make all necessary appointments.

Genetic Alliance separates Genetics Day participants into small groups based on state or geographical region.  You will learn of your small group assignment when you check-in at the registration desk the morning of the event.

Each group will have a group leader, an individual experienced in visiting the offices of elected officials, who will guide participants through a series of six appointments with Congressional offices and their key staff during the course of the day (three after breakfast, and three again after lunch). Group leaders volunteer when registering for Genetics Day.

Each small group will have six scheduled appointments to visit the offices of their elected officials—three after breakfast and three after lunch. In the event that some Congressional staff had to cancel their appointments last-minute, you will still go to that office to drop off briefing materials. Therefore, some groups may have fewer than six sit-down meetings with Congressional offices.

Genetics Day on the Hill is an unparalleled networking event, where participants not only meet individuals from their state and region with different perspectives and professional backgrounds, but participants work with these individuals throughout the course of the day as you learn how to make your meetings with Congressional staff the most effective. We encourage individuals to go outside of their comfort zones and to meet new people.

However, if this is your first time on Capitol Hill or you are traveling with a group, simply email Molly at mbrenner@geneticalliance.org and she can arrange to put people in the same groups.

Yes, Genetic Alliance staff will provide you with information about their committee appointments and a brief bio. However, we encourage you to learn about your Representative and Senators prior to the event.

Each year, Genetic Alliance selects issues to bring to the Hill based upon the input and needs communicated by its diverse network. Issues selected affect all stakeholder groups, and talking points and positions value diverse perspectives. At Genetics Day on the Hill 2011, participants will visit the offices of their elected officials to educate Congress about advancing the work of the Maternal and Child Health Bureau, Health Resources and Services Administration—particularly the Title V Block Grant program—in supporting our nation’s most vulnerable populations; Incentivizing translational research, particularly through the National Center for Accelerating Translational Science, a new Center at the NIH; and providing crucial initiatives that protect and support the health and well-being of individuals through the lifespan, particularly through the CDC programs for birth defects, disabilities, and public health.

We will provide talking points for the three topics selected and we will try to distribute these talking points via email in as far advance of the event as possible. We will also have webinars available shortly before the day of the event.

All participants will be given a list that contains the cell phone numbers of their group members, Genetic Alliance staff, and the Capitol Police. Simply call your group leader to arrange to meet up at your next appointment.

Group leaders volunteer when registering for Genetics Day. Furthermore, you would receive emails from Genetic Alliance staff with information about serving as a group leader.

Genetic Alliance staff will send you emails in the weeks preceding Genetics Day on the Hill with information about your responsibilities. We will first confirm with you that you are willing to serve as a group leader for the state or region you indicated when registering.

We ask all group leaders to participate in a group leader training and question and answer session via conference call the week preceding the event. This call will be one hour where we will review the activities of the day, what is expected of you, and answer any questions about logistics or the talking points. This is different from previous years, when we asked group leaders to arrive an hour early the day of the event to review these items.

There will not be a group leader training the morning of the event. On the day of the event, group leaders are asked to be responsible for the schedule of appointments, navigating the Hill with group members, and facilitating conversations during appointments.  Furthermore, we ask group leaders to bring a digital camera to record the experience of their group.

Genetic Alliance will prepare briefing packets that you will distribute to Hill staffers during your visits.  You may bring copies of either your organization’s brochure or a one-pager on your cause to Genetics Day on the Hill to include among your group’s briefing materials (to insert in the folders).  Please do not bring more than one type of informational material to include in the packets, as only one type of such material from each organization represented in your group will be permitted in the briefing packets. Each group will have six meetings scheduled—therefore each group will have six briefing packets. Please feel free to bring extra brochures or business cards to give to fellow participants as you forge new partnerships and friendships throughout the day.

Yes.  You may ask the Hill staffer with whom you meet, if s/he will pose for a photo with you after your meeting.  We also encourage all group leaders to bring a digital camera for this purpose. Furthermore, we will have one large group photo taken during the lunch hour of the event, which we will distribute to Genetics Day participants.

In addition to extra copies of brochures and business cards, be sure to bring a valid ID (a driver’s license, for example) to pass through security and in case it is requested by the Capitol Police.