February 29-March3, 2016

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

Agenda

Who We Are

Stephanie FischerSenior Director of Patient Engagement and CommunicationsEveryLife Foundation for Rare DiseasesSfischer@everylifefoundation.org

Grant KerberDeputy Director of Communications and Patient ProgramsEveryLife Foundation for Rare DiseasesGkerber@everylifefoundation.org

Lisa SchillSpecial Events CoordinatorRare Disease Legislative AdvocatesLschill@everylifefoundation.org

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

About RDLA

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◦ 1st Lobby Day in 2012: 70 advocates ◦ 2nd Lobby Day in 2013: 150 advocates◦ 3rd Lobby Day in 2014: 170 advocates◦ 4th Lobby Day in 2015: 220 advocates

RDLA Programs

When: February 29th through March 3rd 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

Registration is Required for Each EventRegistration 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/.

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.

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/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.

Monday: Rare Disease Day @ NIH

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.

Shuttle from NIH

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

Monday: Rare Disease Documentary Screening and Cocktail Reception

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.

Tuesday: Legislative Conference

The Legislative Conference trains advocates how to effectively communicate their story and to build effective relationships with their elected officials.

Legislative Conference

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.

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.

Wednesday: Lobby Day

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.

Lobby Day: Hill Meetings

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.

Lobby Day: Hill Meetings

12-1:30pmU.S. Capitol Visitor CenterCongressional 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

Thursday: Congressional Caucus Briefing

Lunch will be provided.

Rayburn House Office Building Foyer5–7:00 pm

This event showcases the artistic talents of the rare disease community. Members of Congress and staff have attended in the past.

Thursday: Rare Artist Reception

The deadline to apply was December 31st and applicants were notified whether they received a stipend or are on the waitlist. ◦ If recipients do not register by January 30th, 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.

Travel Stipends

Travel LogisticsTransportation 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 28th, through Friday, March 4th. You can find details and a link to book rooms at http://rareadvocates.org/rdw/.

The room block includes a limited number of ADA rooms.

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/

Share Your Story

Next Webinar: February 23rdThe second webinar on Rare Disease Week on Capitol Hill, to be held on February 23rd 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.

For information listed on this presentation, please visit RareAdvocates.org/rdw.

Contact Information:Stephanie Fischer: SFischer@everylifefoundation.orgSenior Director of Patient Engagement & Communications

Lisa Schill: Lschill@everylifefoundation.orgRDLA Special Events Coordinator

77 Digital Drive • Suite 210 • Novato, CA •  94949Office:  415-884-0223

www.EveryLifeFoundation.org www.RareAdvocates.org

Questions?

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