2.  Introductions ◦ Introduction to Staff and to RDLA  Monday: Rare Disease Day at NIH Cocktail Reception & Documentary Screening  Tuesday: Legislative Conference  Wednesday: Lobby Day Breakfast & Hill Meetings  Thursday: Congressional Caucus Briefing Rare Artist Reception  Travel Stipends and Logistics  Opportunity to Share Your Story  Questions

3. Who We Are Stephanie Fischer Senior Director of Patient Engagement and Communications EveryLife Foundation for Rare Diseases Sfischer@everylifefoundation.org Grant Kerber Deputy Director of Communications and Patient Programs EveryLife Foundation for Rare Diseases Gkerber@everylifefoundation.org Lisa Schill Special Events Coordinator Rare Disease Legislative Advocates Lschill@everylifefoundation.org

4.  Designed to be a clearinghouse & advocacy center for the rare disease community  Provides resources and tools for individuals and organizations  All events and resources are free and available to the rare disease community  Program of the EveryLife Foundation for Rare Diseases (501c3 public charity)www.RareAdvocates.org

5.  Monthly calls to discuss pending legislation ◦ Agenda is open to all rare organizations  Coordination of the bicameral Rare Disease Congressional Caucus  In-District Lobby Days & Regional Legislative Conferences  Rare Disease Week on Capitol Hill ◦ 1 st Lobby Day in 2012: 70 advocates ◦ 2 nd Lobby Day in 2013: 150 advocates ◦ 3 rd Lobby Day in 2014: 170 advocates ◦ 4 th Lobby Day in 2015: 220 advocates

6.  When: February 29 th through March 3 rd  Who: Rare disease patients, caregivers & other advocates including physicians  What: Series of events aimed at empowering patients  Where: Washington, D.C.  Cost: Free for advocates to attend

7. Registration is Required for Each Event Registration for Rare Disease Day at NIH is separate from registration for the other events. You can register for all of the other events through the link on the webpage for Rare Disease Week on Capitol Hill at http://rareadvocates.org/rdw/. http://rareadvocates.org/rdw/ Please indicate ALL of the events you plan to attend. You must click “Complete Registration” on the second page in order for your registration to be processed. You will receive an email confirmation if your registration was processed. If you did not receive an email confirmation, you are not registered.

8.  9000 Rockville Pike Bethesda, MD ◦ Masur Auditorium (Building 10)  8:30 a.m. to 3:30 p.m.  The event will also be available via webcast.  It is free and open to the public  The event features presentations from leaders of the NIH and FDA as well as updates from rare disease organizations.  The NIH is a short walk from the Metro Medical Center station.  Registration is required and available at: https://events- support.com/events/NIH_Rare_Disease_Day/page/938https://events- support.com/events/NIH_Rare_Disease_Day/page/938 * Please allow approximately 30 minutes for passing through NIH security. All visitors will be required to show valid government-issued identification to access the NIH campus.

9.  RDLA will provide a free shuttle from NIH to the Cocktail Reception and Documentary Screening.  Listen for an announcement at the end of the NIH program to learn where the shuttles will be.  Please indicate in registration for Rare Disease Week on Capitol Hill if you plan to take the shuttle from NIH so we can order enough shuttle buses.  Shuttles can accommodate wheelchairs.  Transportation is not provided after the Cocktail Reception and Documentary Screening.

10.  U.S. Naval Heritage Center at 701 Pennsylvania Ave NW ◦ Closest Metro stop is Archives/Navy Memorial  5:30 pm Cocktail Reception  7:00 pm Documentary screening featuring Dusty’s Trail: Summit of Borneo  8:30pm Panel Discussion

11.  Held at FHI 360, 1825 Connecticut Ave NW #2 (near DuPont Circle)  Program runs from 8:30am to 5:30pm.  Breakfast and lunch will be provided.  Lobby Day meeting schedules will be distributed and advocates will meet their state/regional teams.  Attendance of the Legislative Conference is REQUIRED for anyone attending the Lobby Day.

12. The Legislative Conference trains advocates how to effectively communicate their story and to build effective relationships with their elected officials. Topics include: What to Expect from Congress in an Election Year Why and How to Talk to Regulators Key Policy Initiatives How to Prepare for Hill Meetings Pitching Stories and Submitting Letters to the Editor Two sets of break-out sessions provide the opportunity for advocates to learn more about working with industry, social media, FDA and key state issues such as newborn screening.

13.  Capitol Hill Club (300 First Street SE)  7am: Breakfast Buffet  7:30-9am: Remarks by Dr. Robert Califf, Deputy Commissioner of Medical Products and Tobacco and nominee for FDA Commissioner, as well as Members of Congress  Hill meetings will be scheduled from 9:00a.m.- 5:00 p.m.

14.  RDLA retained Advocacy Associates to schedule Hill meetings for advocates participating in the Lobby Day.  You must register for the Legislative Conference and Lobby Day in order to have meetings scheduled for you.  Advocates will be grouped in state (and possibly regional) teams for meetings.  Advocates will receive their Lobby Day schedules and meet with their groups during the Legislative Conference.  If you register for the Lobby Day but later determine you cannot attend, please notify us as soon as possible.

15.  Meetings will be with Members of Congress and/or Congressional staff. Be respectful to both.  Meetings will likely be 20-30 minutes each.  Arrive no more than 10 minutes early for your meetings. Do not be late.  It takes about 10-20 minutes to walk from the Senate side to the House side for meetings.  RDLA will set up a table in the cafeteria in the basement of the Rayburn House Office Building. Feel free to join us between meetings.

16. 12-1:30pm U.S. Capitol Visitor Center Congressional Auditorium Goals for Rare Disease Caucus Briefings:  Provide Members of Congress and staff with an understanding of our legislative priorities  Build relationships with Members and staff  Raise awareness of rare diseases Lunch will be provided.

17. Rayburn House Office Building Foyer 5–7:00 pm This event showcases the artistic talents of the rare disease community. Members of Congress and staff have attended in the past.

18.  The deadline to apply was December 31 st and applicants were notified whether they received a stipend or are on the waitlist. ◦ If recipients do not register by January 30 th, their stipends will be awarded to applicants on the waitlist. ◦ Stipends may still be available in Alaska, Arkansas, Delaware, Hawaii, Idaho, Iowa, Kentucky, Maine, Mississippi, Montana, Nebraska, New Hampshire, New Mexico, North Dakota, South Dakota, Vermont, West Virginia and Wyoming.  Advocates must attend the Legislative Conference and Lobby Day to receive a travel stipend.  Travel stipends will be given out at the Legislative Conference. Advocates must present photo ID, provide a Social Security number and sign for the check.  Stipends can be used for any travel expenses including hotel, meals, airfare, gas, parking, etc.

19. Travel Logistics Transportation is only provided from the NIH to the Cocktail Reception and Documentary Screening on Monday. Transportation to and from your hotel to the events is your responsibility. We have a block of rooms at the Fairfax at Embassy Row from Sunday, February 28 th, through Friday, March 4 th. You can find details and a link to book rooms at http://rareadvocates.org/rdw/.http://rareadvocates.org/rdw/ The room block includes a limited number of ADA rooms.

20.  We want every Member of Congress to hear from constituents affected by rare disease.  If you are not able to join us, please share your story and we will hand-deliver it to your Member of Congress and Senators.  Submit your unique story here, and please share the link with your networks: http://rareadvocates.org/rdw/patientstories/

21. Next Webinar: February 23rd The second webinar on Rare Disease Week on Capitol Hill, to be held on February 23 rd at 2pm EST, will provide more detailed advice to participants such as what to wear and what to bring for each event, and where to find additional resources. Advocacy Associates will join us for this webinar to discuss the Hill meetings and answer your questions. You can register for this webinar at http://bit.ly/1V8Vn1o.http://bit.ly/1V8Vn1o

22. RareAdvocates.org/rdw. For information listed on this presentation, please visit RareAdvocates.org/rdw. Contact Information: Stephanie Fischer: SFischer@everylifefoundation.org Senior Director of Patient Engagement & Communications Lisa Schill: Lschill@everylifefoundation.org RDLA Special Events Coordinator 77 Digital Drive Suite 210 Novato, CA 94949 Office: 415-884-0223 www.EveryLifeFoundation.org www.RareAdvocates.org