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

Transcription

1

2 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 prepare for your trip but you will receive more information when you arrive! The hotel & all the events are on the Red Metro Line to make it easy for you to get around but they are in different locations to allow you to have a chance to experience our Capitol City

3 No worries You will be with others who have done this before All you need is to know your personal story on how a rare disease has affected your family Members of Congress do not expect you to be a policy expert Learn about issues Tuesday at the conference Decide what issues are most important to you Meet with other advocates from your region to discuss your plan Wed. Hill meetings are being scheduled for you Final details, training, & questions at Lobby Day breakfast on Wed.

4 Introductions About RDLA Who s attending Travel Arrangements What to bring/wear Where to be Monday: Documentary Screening Tuesday: Legislative Conference Wednesday: Lobby Day Meeting tips What to bring Asks Advocacy Associates Thursday: Congressional Caucus Briefing Thursday: RareArtist Friday: Rare Disease NIH Q&A

5 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)

6 200 Rare Disease Advocates Registered 20 Industry Representatives joining us for the Conference More than 100 different patient organizations/diseases represented Thank you to our Sponsors:

7 We will be running a full page ad in Politico during Lobby Day All Patients Organizations listed on the next slide will be listed on the ad Please double check to make sure your organization is listed correctly!

8 Organizations participating in Rare Disease Week on Capitol Hill 2015 A Day in our Shoes Addison's disease Al Azher University Alagille Syndrome Alliance American Behcet's Disease Association Amyloidosis Foundation Angels4Patients ARPKD Autosomal Recessive Polycystic Kidney Disease Batten Disease Support and Research Assoc. BDSRA - NCL (Batten) Disease Beckwith Weidemann Children's Foundation International Behcets Disease BRBN Alliance Bring Light to BBS/ Bardet Biedl Syndrome Caleb's Crusade/Childhood Cancer Chase the Cure Cindy's Rainbow Congenital Hyperinsulinism International Cure AHC Cure JM Foundation CADASIL Association Curing Retinal Blindness Foundation CUSHNIG'S Dante's Hope Deerfield Institute dercumsfoundation.org Desmoid Tumor Research Foundation Duchenne Awareness/Eteplirsen Ehlers Danlos National Foundation Emily's Fight Fight ALD Foundation for Ichthyosis & Related Skin Types Foundation for Sarcoidosis Research Gaucher 2/3 Gaucher type 3 patient/ GT23 FOUNDATION GBS/ CIDP FOUNDATION NEPAL Giant Axonal Neuropathy Global Genes GT23 Foundation/ Gaucher Disease types 2 & 3 HDSA Health and Medicine Counsel of Washington Hope 4 Hunter / MPS II Hope4TylerandLuke/ Med23 Awareness Huntington's Disease Society of America (HDSA) ICAN, International Cancer Advocacy Network International Pemphigus and Pemphigoid Foundation ISMRD.org Jett Foundation/ duchenne md Jewish Federation of Metropolitan Chicago Joshua Frase Foundation / Myotubular Myopathy Kids v Cancer Let Them be Little Foundation Little Miss Hannah Foundation Lipedema, Lymphedema Ehlers Danlos Lipodystrophy United MDA Mitochondrial Disease MLD Foundation MPS society Myocarditis Foundation Myotonic Dystrophy Foundation National Center for Health Research National LeioMyoSarcoma Foundation National MPS Society NECPAD/PKU Noah's Hope - Batten Disease Parent Project Muscular Dystrophy Pediatric Hydrocephalus Foundation, Inc. Pediatric Justice Assoc Phelan McDermid Syndrome Foundation PKD Foundation PTEN Hamartoma Tumor Syndrome Foundation Pulmonary Hypertension Association Rare and undiagnosed network Rare Disease United Foundation RareCandace.com RASopathies Network USA RDR Relapsing Polychondritis Awareness and Support Foundation, Inc rethink Arch sarcoidosis Sarcoidosis of Long Island Sarcoidosis of Nashville Sarcoma Foundation of America SCAD Alliance (spontaneous coronary artery dissection) SCID ADA SMA Support System Sobi inc Space2Thrive Spinal Muscular Atrophy (SMA) Foundation SSADH Association St. Baldrick's Foundation/Alliance for Childhood Cancer Talk Health with Jamie, Inc. Taylor's Tale The ALS Association Timothy Syndrome U.R. Our Hope Uplifting Athletes Wake Up Narcolepsy, Inc. Williams Syndrome Family of Hope Zeqing for a cure

9

10 Comfortable Shoes Umbrella Prepare for cold weather Dress Professionally for Lobby Day Hill Meetings (wear comfortable shoes, there is a good deal of walking to meetings)* Wear Jeans to support the Global Genes Project Tuesday Legislative Conference Friday s NIH events

11 The attire for Lobby day is business-casual, with emphasis more on the business than the casual. I would think about what you would wear to a nice job interview or to church

12 To the Capitol

13

14 Carnegie Institution of Science This is a widely attended public event. There is not cost to attend. 5:30-9:30pm: food & drinks* 7:00pm: movie screening 8:30-9:30pm: panel discussion Featuring Dr. Gahl Sponsored by *The Darlington House will be providing Hors d'oeuvres including smoked salmon, cheeses, handmade pasta and beer & wine.

15 1530 P Street Northwest Use P Street Entrance on 1st floor minute walk from Dupont Circle Metro

16 Address: 1825 Connecticut Avenue Northwest #2, Washington, DC 20009

17 8:30 am - 9:15 am registration & breakfast Conference starts at 9:15am Breakfast, lunch & afternoon snack included! You will Receive Hill meeting schedule, issue training & talking points, and skill training. You must attend the Conference to attend the Lobby Day

18 9:30 Overview of the 114 th Congress 10:10 Know Your Lobbying Rights 10:40 Avenues for Impact 11:40 Lunch Break 12:10 21 st Century Cures Initiative 1:30 Prepping for your Hill Meetings 2:10 Break 2:40 Breakout Skill Training Workshops 3:40 State/Regional Breakout Session 5:00 End

19 Women s Democratic Club 1526 New Hampshire Ave NW, Washington, DC :00 am Breakfast begins 7:20 am Training and Keynote Meetings scheduled from 9:00 a.m.- 5:00 p.m.

20 1526 New Hampshire Ave NW, Washington, DC 20036

21 Meetings will be with Members of Congress and/or Congressional Staff Meetings will be no more than 25 minutes long Please 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 Remember you are an expert in your story and your disease & that is all that matters!

22

23 Practice your 2 minute pitch on your personal story A clear concise actionable ASK is a must Practice bi-partisanship party does not matter when it comes to rare diseases Become comfortable with your group, and be respectful of group dynamics Contact RDLA if you have relationships with your Member of Congress or have questions about a specific meeting

24 Get acquainted with your members of Congress. We will include your member s bios in your State Packet as well as in Advocacy Associates app. Tips: Look at their Congressional Scorecard and see where they stand on Rare Disease Issues: Rareadvocates.org/scorecard Be respectful of their party affiliation, and aware of the fact that funding issues may go against their political ideology Pay attention to what they are doing in the media; what are they saying, what do they care about? Look for things that you may have in common. For example, Rep. Marino from Penn. has a daughter with a rare disease and is the Chair of the Cystic Fibrosis Caucus

25 Pictures of your family or loved one affected by rare disease RDLA will be preparing one-sheets to leave behind on the Congressional Caucus & on specific legislative issues Congressional Report Card Global Genes will be providing ribbons for you to give out during your meetings If you would like to leave behind information on your disease or organization for your Member of Congress, make sure that it fits neatly on the front of one page

26 Orphan Product Extensions Now Accelerating Cures & Treatments was introduced with 3 bipartisan co-sponsors including Reps. Bilirakis (R-FL) and Butterfield (D-NC). The Act provides a six-month extension of exclusivity for companies to re-purpose drugs for rare diseases or Rarepurpose drugs. The EveryLife Foundation along with 135 patient organizations have endorsed the OPEN ACT.

27 The Compassionate Use Reform & Enhancement Act was introduced by Rep. Michael McCaul (R-TX), a co-chair of the Childhood Cancer Caucus, with bipartisan support from cosponsors Reps. Butterfield (D-NC), Burgess (R-TX), Matsui (D-CA), and Lance (R-NJ). The bill aims to create clear guidance on industry and FDA policies to help facilitate patient access to experimental or unapproved drugs.

28 The Dormant Therapies Act, originally called the MODDERN Cures Act, has received bi-partisan and bicameral (House & Senate) support, with sponsorship from Rep. Leonard Lance (R-NJ-7) and Sens. Orrin Hatch (R-UT)and Michael Bennett (D-CO). The National Health Council (NHC) has been the leading patient group supporting the legislation. The Act creates new patent protection for potential therapies that companies will not currently develop because they do not have patent protection to make them profitable.

29 The bipartisan Advancing Research for Neurological Diseases Act of 2015 was re-introduced by Reps. Michael Burgess (R-TX) and Chris Van Hollen (D-MD) It would create a national data collection system for neurological diseases, including Parkinson s disease and multiple sclerosis, along with other diseases at the Centers for Disease Control (CDC). The system will collect information on the incidence and prevalence of neurological diseases and provide a foundation for evaluating and understanding many factors such as geographic clusters of diagnoses, variances in the gender ratio, disease burden, and changes in healthcare practices. The bill s advocacy efforts are being led by the Parkinson s Action Network and the National MS Society.

30 ASK: Join the Rare Disease Congressional Caucus The bipartisan Rare Disease Congressional Caucus is lead by Representatives Leonard Lance (R-NJ) and Joseph Crowley (D- NY) to promote awareness of Rare Disease issues. Our goal for the Caucus is to grow House membership and formalize the Caucus in the Senate.

31

32 Topics Advocacy Associates scheduling process Structure of your schedule Schedule distribution AdvocacyDay App

33 Congressional Schedules for Rare Disease Week Constituency-based meetings Based on your primary address You will be grouped into teams for visits Based on geographical location Prioritize meetings with legislators Time-frame: 9 am 5 pm on Wednesday, Feb. 25 th Constituent Coffees Let us know about timing conflicts

34 Schedule Distribution We will be on-site the afternoon of Feb. 24 th and the morning of Feb. 25 th We will provide printed meeting itineraries Office Time Location Meeting With Advocates in meeting Map of Capitol Hill Office Number We will call you with any meeting changes

35 AdvocacyDay App - Schedules View full meeting schedule Time, location, who meeting is with, other participants Push notifications for meeting changes We will also call you App schedule is enabled on Feb. 24 th when you see us on-site You will receive a printed itinerary

36 AdvocacyDay App Day-of Features Map to meetings GPS routing Take notes about meetings View talking points Feedback surveys Post to Twitter and Facebook Chat with other advocates

37 AdvocacyDay App Preparation Features Research your legislators Bio Committee info Social media Website News Research your bills Summary Status Cosponsorship Votes You will receive your app login tomorrow so you can research your Members of Congress and bills in advance

38 AdvocacyDay App! Our app is available in the App Store for iphone or ipad and in the marketplace for Android. You can also access a web version of the app at Please note that the app is called AdvocacyDay (all one word) by Constituent Voice.

39 Contact Info Kaytee (Lozier) Yakacki Kirsten Holland

40 Urgent Healthcare Policy Needs of the Rare Disease The U.S. Capitol Visitors Center 12:00 am 1:00 pm (Lunch will be provided) The Capitol Visitor Center, the new main entrance to the U.S. Capitol, is located beneath the East Front plaza of the U.S. Capitol at First Street and East Capitol Street. Presented by:

41 Thursday 1:30 pm on the West Steps of the Capitol (the steps that face the Capitol Mall and the Washington Monument)

42 5:30-8:00 PM Rayburn House Office Building Come view the art from winners of the 2014 RareArtist competition and mingle and network with congressional staff

43 9000 Rockville Pike Bethesda, MD Masur Auditorium (Building 10) Friday 8:30 a.m. to 5:00 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 diseases research community. The NIH is a short walk from the Metro Medical Center station *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

44 Feel Free to contact (415) Andy Russell arussell@everylifefoundation.org Max Bronstein mbronstein@everylifefoundation.org Check for Latest updates on Join us our Facebook event for updated event information & meet other advocates before you arrive! -