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February 29-March3, 2016 February 29-March3, 2016

February 29-March3, 2016 - PowerPoint Presentation

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February 29-March3, 2016 - PPT Presentation

Introductions Introduction to Staff and to RDLA Monday Rare Disease Day at NIH Cocktail Reception amp Documentary Screening Tuesday Legislative Conference Wednesday ID: 550832

day rare lobby disease rare day disease lobby meetings advocates legislative org hill nih events conference registration rareadvocates everylifefoundation

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Slide1

February 29-March3, 2016Slide2

IntroductionsIntroduction to Staff and to RDLAMonday: Rare Disease Day at NIH

Cocktail

Reception & Documentary ScreeningTuesday: Legislative ConferenceWednesday: Lobby Day Breakfast & Hill MeetingsThursday: Congressional Caucus Briefing Rare Artist ReceptionTravel Stipends and LogisticsOpportunity to Share Your StoryQuestions

Agenda

Slide3

Who We AreStephanie FischerSenior Director of Patient Engagement and CommunicationsEveryLife Foundation for Rare DiseasesSfischer@everylifefoundation.org

Grant Kerber

Deputy Director of Communications and Patient ProgramsEveryLife Foundation for Rare DiseasesGkerber@everylifefoundation.orgLisa SchillSpecial Events CoordinatorRare Disease Legislative AdvocatesLschill@everylifefoundation.orgSlide4

Designed to be a clearinghouse & advocacy center for the rare disease communityProvides resources and tools for individuals and organizationsAll events and resources are free and available to the rare disease communityProgram of the EveryLife Foundation for Rare Diseases (501c3 public charity) www.RareAdvocates.org

About RDLA Slide5

Monthly calls to discuss pending legislationAgenda is open to all rare organizationsCoordination of the bicameral Rare Disease Congressional CaucusIn-District Lobby Days & Regional Legislative ConferencesRare Disease Week on Capitol Hill1st Lobby Day in 2012: 70 advocates 2nd

Lobby Day in 2013: 150 advocates

3rd Lobby Day in 2014: 170 advocates4th Lobby Day in 2015: 220 advocatesRDLA Programs Slide6

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 attendSlide7

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.Slide8

9000 Rockville Pike Bethesda, MDMasur 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

publicThe 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 @ NIHSlide9

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 NIHSlide10

U.S. Naval Heritage Center at 701 Pennsylvania Ave NWClosest Metro stop is Archives/Navy Memorial5:30 pm  Cocktail Reception7:00 pm  Documentary screening featuring Dusty’s Trail: Summit of Borneo8:30pm Panel Discussion

Monday:

Rare Disease Documentary Screening and Cocktail ReceptionSlide11

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 ConferenceSlide12

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 RegulatorsKey Policy InitiativesHow to Prepare for Hill MeetingsPitching Stories and Submitting Letters to the EditorTwo 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.Slide13

Capitol Hill Club (300 First Street SE)7am: Breakfast Buffet7:30-9am: Remarks by Dr. Robert Califf, Deputy Commissioner of Medical Products and Tobacco and nominee for FDA Commissioner, as well as Members of CongressHill meetings will be scheduled from 9:00a.m.- 5:00 p.m.Wednesday: Lobby Day Slide14

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 MeetingsSlide15

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 Slide16

12-1:30pmU.S. Capitol Visitor CenterCongressional AuditoriumGoals 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 diseasesThursday: Congressional Caucus BriefingLunch will be provided.Slide17

Rayburn House Office Building Foyer5–7:00 pmThis event showcases the artistic talents of the rare disease community. Members of Congress and staff have attended in the past.Thursday: Rare Artist Reception Slide18

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 StipendsSlide19

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 28

th

, 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.Slide20

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 Slide21

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.Slide22

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

Contact Information:

Stephanie Fischer: SFischer@everylifefoundation.orgSenior Director of Patient Engagement & CommunicationsLisa Schill: Lschill@everylifefoundation.orgRDLA Special Events Coordinator77 Digital Drive • Suite 210 • Novato, CA •  94949Office:  415-884-0223 www.EveryLifeFoundation.org www.RareAdvocates.org

Questions?Slide23

Thank you to our sponsors: