Introductions About RDLA Rare Disease Week Who s attending Monday: Documentary Screening & Cocktail Reception Tuesday: Legislative Conference

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Harvey Hampton
6 years ago
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1 Presented by:

Day Advocacy Associates Scheduling Thursday: Congressional Caucus Briefing

3 Introductions About RDLA Rare Disease Week Who s attending Monday: Documentary Screening & Cocktail Reception Tuesday: Legislative Conference Wednesday: Lobby Day Advocacy Associates Scheduling Thursday: Congressional Caucus Briefing RareArtist Reception Friday: NIH event Travel Arrangements/Scholarships Share your Story Questions

4 Designed to be a clearinghouse & advocacy center for all Rare Disease Legislation Provides resources & tools for individuals & organizations All events & resources are free & open to the entire Rare Disease Community Program of the EveryLife Foundation for Rare Diseases (501c3 public charity)

Summer Recess Lobby Day during Rare Disease Week in D.C.

5 Monthly meetings/calls to discuss pending legislation Agenda is open for all organizations to contribute Helps coordinate the Rare Disease Congressional Caucus In-District Lobby Days during Summer Recess Lobby Day during Rare Disease Week in D.C. 1 st Lobby Day in Advocates on the Hill 2 nd Lobby Day in Advocates on the Hill 3 rd Lobby Day in Advocates on the Hill

6 When: February 23 rd 27 th Who: Rare Disease patients, their families, caregivers, & advocates What: A week s worth of events aimed at empowering patients and building relationships with members of Congress. Where: Washington D.C. Cost: FREE to attend for patient advocates

7 Patient organizations participating: A Day in our Shoes/Dup15Q AACH Abetalipoproteinemia and undiagnosed Adrenal Insufficiency United Alagille Syndrome Alliance American Behcet's Disease Association Amyloidosis Foundation Angels4Patients Ariadne Capital Investments LLC Autosomal Recessive Polycystic Kidney Disease Batten Disease Support and Research BDSRA - NCL (Batten) Disease Beckwith Weidemann Children's Foundation International Blair Works BRBN Alliance Caleb's Crusade/Childhood Cancer Chase the cure Inc. Niemann Pick disease Childhood Cancer Cindy's Rainbow Cnmc Congenital Hyperinsulinism International Cryopyrin Associated Periodic Syndrome CSI Cure AHC curecadasil/cadasil Association Curing Retinal Blindness Foundation CVK Dante's Hope / Batten Disease DCPS Art school Deerfield Institute Dercums Disease Desmoid Tumor Research Foundation Duchenne Awareness/Eteplirsen Emily's Fight Erik Metzler Foundation/ALS Family Care Council Fibromuscular Dysplasia Society of America Fight ALD Foundation for Ichthyosis & Related Skin Types Foundation for Sarcoidosis Research Gaucher 2/3 GBS/ CIDP FOUNDATION NEPAL Giant Axonal Neuropathy Global Genes GT23 Foundation/ Gaucher Disease types 2 and 3 Health and Medicine Counsel of Washington Hermansky-Pudlak Syndrome Network Hope 4 Hunter / MPS II Hope4TylerandLuke/ Med23 Awareness HPS Network Inc Huntington's Disease Society of America (HDSA) International Pemphigus and Pemphigoid Foundation IWMF Jett foundation/ duchenne md Jewish Federation of Metropolitan Chicago Jonah's Just Begun Joshua Frase Foundation / Myotubular Myopathy Kartagener Syndrome Let Them Be Little X2 Foundation / MPSII Lipedema, Lymphedema Ehlers Danlos Lipoedema & Lymphedema MPS society Multiple Sclerosis Myocarditis Foundation Myotonic Dystrophy Foundation Narcolepsy Network National Center for Health Research National Leiomyosarcoma Foundation National MPS Society National Tay-Sachs & Allied Diseases Association NECPAD/PKU NJ Rare Diseases/SCD Noah's Hope - Batten Disease NORD Parent Project Muscular Dystrophy Pediatric Hydrocephalus Foundation, Inc. Pediatric Justice Assoc Phelan-McDermid Syndrome Foundation PhRMA PKD foundation POTS PTEN Hamartoma Tumor Syndrome Foundation Pulmonary Hypertension Association Rare Disease United Foundation RareCandace.com RASopathies Network USA RDR Relapsing Polychondritis Awareness rethink Arch Sarcoidosis Sarcoidosis of Long Island Sarcoma Foundation of America SCAD Alliance (spontaneous coronary artery dissection) SFA Share Fund Space2Thrive The ALS Association U.R. Our Hope U.S. Pain Foundation Williams Syndrome Family of Hope Zeqing for a cure

Presented by: @ Carnegie Institution for Science 1530 P

Reception 7:00 pm Documentary screening featuring the

8 Presented Carnegie Institution for Science 1530 P Street Northwest, Washington, DC :30 pm Cocktail Reception 7:00 pm Documentary screening featuring the film: 8:30 pm Panel Discussion Thank you to our partners:

114 th Congress Receive materials: one-sheets, hill meeting schedule, talking

9 FHI 360, 1825 Connecticut Ave NW #2, Washington, DC (near DuPont Circle) Legislative Conference includes: Issue and advocacy training Information on the 114 th Congress Receive materials: one-sheets, hill meeting schedule, talking points Coffee, breakfast & lunch *You must attend the Conference to attend the Lobby Day

10 Morning Session Breakfast & Registration Welcome - Overview of the Week Overview of the 114 th Congress Know Your Lobbying Rights Avenues for Impact

11 Lunch Session 21 st Century Cures Initiative Overview of Lobby Day Schedules - Advocacy Associates trouble shooting with Advocacy Associates Snack and Coffee break

12 Late-Afternoon Session Prepping for your Meeting Break-Out Skill Training Workshops Starting your own Non-profit Tips and tools for getting your rare disease organization to the next level. Learn about obtaining 501c3 status, creating a mission, vision, and a board of directors. Essential skills for any aspiring organization. Polish & Practice your Presentation Pitch Learn about persuasive and effective communication for maximum advocacy impact. Introducing Legislation Hear about the do s and don ts for introducing legislation, coalition building, and how to move a bill through the legislative process. Social Media Advocacy Learn some insider tips for leveraging social media to raise awareness and build an action network for your cause. State/Regional Break-Out Sessions Closing Remarks

13 RDLA is working with Advocacy Associates to schedule meetings on your behalf Advocates will be grouped in State & regional teams with other advocates for your meetings Advocates will receive their schedules, meet with their groups and plan out their Lobby Day the day before, during the Legislative Conference There is an app for you to download on your smart phone that has your schedule & biographies for the Member of Congress

14 Women s Democratic Club 1526 New Hampshire Ave NW, Washington, DC :00 am Breakfast buffet open 7:30 am Lobby Training Begins Meetings scheduled from 9:00a.m.- 5:00 p.m. Dress Professionally, Business attire Wear Comfortable Shoes

15 Meetings will be with Members of Congress &/or Congressional Staff Meetings will be no more than 20 minutes long Arrive no more than 10 minutes early for your meeting RDLA will set up a table in the Rayburn House Office Building Cafeteria in the Basement feel free to join us between meetings It takes about minutes to walk from the Senate side to the House side for meetings Cabs are easy to get however they still take at least 10 minutes & cost $8-$10

16 Pictures of your family or loved one affected by rare disease RDLA will be preparing one-sheets to leave behind If you would like to present a specific issue or provide a leave behind about your disease or organization to your Member of Congress make sure that it fits neatly on one page. *Contact me for help in making, creating or formatting a one-sheet

Congressional Staff with an understanding of our legislative needs

17 Urgent Healthcare Policy Needs of the Rare Disease Community 12:00 noon - 1:00 pm Goals for Rare Disease Caucus Briefings: Provide Congressional Staff with an understanding of our legislative needs Relationship building and networking with staff Raise rare disease awareness

18 Rayburn Foyer (floor 1) 5:00 pm 7:00 pm Showcasing the art of the Rare Disease Community

19 9000 Rockville Pike Bethesda, MD Masur Auditorium (Building 10) Friday 8:30 a.m. to 3:00 p.m. The event will also be available via webcast Attendance is free and open to the public The event features tours, presentations, posters and exhibits from the rare disease research community. The NIH is a short walk from the Metro Medical Center station Registration Link: *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

20 everylifefoundation.org/travel-scholarship-application/ Final Stipends ($600) awarded February 5 th Stipends still available in: Alaska, Arizona, Arkansas, Hawaii, Idaho, Iowa, Kentucky, Maine, Mississippi, Missouri, Montana, Nebraska, New Hampshire, New Mexico, North Dakota, South Carolina, South Dakota, Utah, Vermont, West Virginia, and Wyoming Advocates must attend the Legislative Conference to receive their travel Stipend Travel Stipends will be given out at the Legislative Conference Registration Advocates must present photo ID, provide a Social Security Number & sign for the check Stipends can be used for any travel expenses: hotel, food, airfare, gas, parking, etc.

21 The Embassy Row is Sold Out! we are looking for similar priced rooms so please let us know if you need a hotel There are still hotels in the DC area available: Washington Plaza is close to many of the events

22 If you or someone you know with a rare disease cannot make it to Rare Disease Week on Capitol Hill, RDLA still wants your voices to be heard. Please share your story with the Foundation and we will make sure it is hand delivered to your representative in D.C. Submit your Rare Story here:

23 Friend the EveryLife Staff to receive invite!

Relations EVERYLIFE FOUNDATION FOR RARE DISEASES arussell@everylifefoundation.

24 For all the information listed on this presentation go RareAdvocates.org/rdw Contact Information: Andy Russell Associate Director of Advocacy and Government Relations EVERYLIFE FOUNDATION FOR RARE DISEASES 77 Digital Drive Suite 210 Novato, CA Office: Fax:

This will be our 4 th year on Capitol Hill During Rare Disease Day week! Every year it keeps growing with more advocates & more events This

This will be our 4 th year on Capitol Hill During Rare Disease Day week! Every year it keeps growing with more advocates & more events This presentation provides some logistical information to help you