RDLA has a plethora of tools you can use to amplify your voice and make sure it is heard in Government.

– Follow and track the bills affecting the Rare Disease Community, including the bills rare disease advocates lobbied for during Rare Disease Week 2014: http://www.congressweb.com/kaki/bills

– Find, write, and call your elected officials to tell them what you want their priorities to be: http://www.congressweb.com/kaki/legislators

– Use this link to find media contacts in your area and send an op ed to your local paper: http://www.congressweb.com/kaki/media

– Find information on the elections in your area: http://www.congressweb.com/kaki/voterinformation

How to Attend a Congressional Town Hall

Taking part in a public or town hall meeting is a great way to build a relationship with your Member of Congress and his or her staff and to raise the profile of the rare disease community to policy-makers.  Such events generally take place in your community or district throughout the year and provide an opportunity for Members of Congress to hear from constituents on a wide range of concerns.

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Ask Your Candidates! where they stand on medical progress

Research!America’s Ask Your Candidates! program is the only voter education initiative focused on our nation’s commitment to medical and other health-related research. The AYC! project will run through the elections on Tuesday, November 4, 2014. With the help of Research!America, voters can ask candidates for their stances on any number of issues relating to medical research.

Learn more at www.askyourcandidates.org!

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Meet the Rare Disease Congressional Caucus

Full House Member List with Committee Assignments:

1. Spencer Bachus (R-AL): Judiciary; Financial Oversight
2. Lou Barletta (R-PA): Education & Workforce; Homeland Security; Judiciary
3. Gus Bilirakis (R-FL): Energy & Commerce; Veterans’ Affairs
4. Marsha Blackburn (R-TN): Budget; Energy & Commerce
5. Suzanne Bonamici (D-OR): Education & the Workforce; Science, Space & Technology
6. Bruce Braley (D-IA): Energy & Commerce
7. Mo Brooks (R-AL): Armed Service; Foreign Affairs; Science, Space & Technology
8. Julia Brownley (D-CA): Science, Space & Technology; Veterans’ Affairs
9. Michael Burgess (R-TX): Energy & Commerce; Rules
10. G.K. Butterfield (D-NC): Energy & Commerce
11. Shelley Moore Capito (R-WV): Financial Services; Transportation & Infrastructure
12. Mike Capuano (D-MA): Ethics; Financial Services; Transportation & Infrastructure
13. Andre Carson (D-IN): Armed Services; Transportation & Infrastructure
14. John Carter (R-TX): Appropriations
15. Gerald Connolly (D-VA): Foreign Affairs; Oversight & Government Reform
16. Joe Crowley (D-NY): Ways & Means; Dem. Caucus Vice-Chair
17. Rodney L. Davis (R-IL): Oversight and Government Reform; Ways and Means
18. Charlie Dent (R-PA): Appropriations; Ethics
19. Eliot Engel (D-NY): Energy & Commerce; Foreign Affairs (Rnk. Mem.)
20. Anna Eshoo (D-CA): Energy & Commerce
21. Stephen Fincher (R-TN): Agriculture; Financial Services
22. Michael G. Fitzpatrick (R-PA): Financial Services
23.  Jeff Fortenberry (R-NE): Appropriations
24. Jim Gerlach (R-PA): Ways & Means
25. Phil Gingrey (R-GA): Energy & Commerce; House Administration
26. Tim Griffin (R-AR): Agriculture; Transportation
27. Richard Hanna (R-NY): Small Business; Transportation & Infrastructure; Joint Economic
28. Rush Holt (D-NJ): Education & the Workforce; Natural Resources
29. Jared Huffman (D-CA): Budget, Natural Resources
30. Darrell Issa (R-CA): Judiciary; Oversight & Government Reform (Chair)
31. Eddie Bernice Johnson (D-TX): Transportation and Infrastructure; Science and Technology
32. Hank Johnson (D-GA): Armed Services; Judiciary
33. David P. Joyce (R-OH): Appropriations
34. Marcy Kaptur (D-OH): Appropriations
35. Peter King (R-NY): Financial Services; Homeland Security; Permanent Select Committee on Intelligence
36. John Kline (R-MN): Armed Services; Education & the Workforce (Chair)
37. Leonard Lance (R-NJ): Energy & Commerce
38. Tom Latham (R-IA): Appropriations
39. Dan Lipinski (D-IL): Science & Technology
40. Dave Loebsack (D-IA): Armed Services; Education & the Workforce
41. Zoe Lofgren (D-CA): House Administration; Judiciary; Science, Space & Technology
42. Carolyn Maloney (D-NY): Financial Services; Oversight & Government Reform; Joint Economic
43. Sean Patrick Maloney (D-NY): Agriculture; Transportation and Infrastructure
44. Kenny Marchant (R-TX): Education and the Workforce; Ways and Means
45. Tom Marino (R-PA): Foreign Affairs; Homeland Security; Judiciary
46. Carolyn McCarthy (D-NY): Education & the Workforce; Financial Services
47. Michael McCaul (R-TX): Foreign Affairs; Homeland Security (Chair); Science, Space & Tech
48. Jim McGovern (D-MA): Agriculture; Rules
49. David McKinley (R-WV): Energy & Commerce
50. James Moran (D-VA): Appropriations
51. Richard Neal (D-MA): Ways & Means
52. Bill Pascrell (D-NJ): Budget; Ways & Means
53. Erik Paulsen (R-MN): Ways & Means, Joint Economic
54. Donald Payne, Jr. (D-NJ): Homeland Security, Small Business
55. Gary Peters (D-MI): Financial Services
56. Joseph Pitts (R-PA): Energy & Commerce
57. Jared Polis (D-CO): Education and the Workforce; Rules
58. Bill Posey (R-FL): Financial Services; Science, Space & Technology
59. Mike Quigley (D-IL): Appropriations
60. Reid Ribble (R-WI): Agriculture; Budget; Transportation and Infrastructure
61. Ilena Ros-Letinen (D-FL): Rules; Foreign Affairs
62. Peter Roskam (R-IL): Ways & Means
63. John Runyan (R-NJ): Armed Services; Natural Resources; Veterans’ Affairs
64. Loretta Sanchez (D-CA): Armed Services; Homeland Security; Joint Economic
65. Jan Schakowsky (D-IL): Energy and Commerce; Permanent Select Committee on Intelligence
66. David Scott (D-GA): Agriculture; Financial Services
67. Pete Sessions (R-TX): Rules, Chairman
68. Carol Shea-Porter (D-NH): Armed Services; Natural Resources
69. Brad Sherman (D-CA): Financial Services; Foreign Affairs
70. Adam Smith (D-WA): Armed Services (Rank. Mem.)
71. Chris Smith (R-NJ) : Foreign Affairs
72. Steve Stivers (R-OH):
Financial Services
73. Pat Tiberi (R-OH):
Ways & Means
74. Fred Upton (R-MI):
Energy & Commerce (Chair)
75. Debbie Wasserman-Schultz (D-FL):
76. Henry Waxman (D-CA):
Energy & Commerce
77. Robert Wittman (R-VA):
Armed services; Natural Resources
78. Frank Wolf (R-VA):
79. John Yarmuth (D-KY):
Budget; Energy & Commerce

RDLA is working to formalize the Caucus in the Senate – check back for updates!

2014 Rare Disease Legislative Conference Presentations

RDLA’s 2014 Legislative Conference took place on Feb. 25 at the National Press Club in Washington D.C. Over 160 rare disease advocates were in attendance, with 25 speakers educating and training the advocates how to make their voices heard. Click on the title to view the video from the conference.

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Join us in Washington DC: Rare Disease Day – Week Feb. 25th – 28th

You are invited to join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day (Week), February 25 – 28, 2013.  Below is an overview of the events.

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2013 Rare Disease Legislative Conference Presentations


  1. Welcome – Overview of the Day

    Julia Jenkins, Rare Disease Legislative Advocates

  2. Message from Abbey Meyers on the Passage of the Orphan Drug Act
  3. The Power of One: Advocacy Matters

    Anthony J. Castaldo, US Hereditary Angioedema Association

  4. Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change

    Margaret Anderson, FasterCures

  5. The Creating Hope Act: An Advocacy Success Story

    Mobilizing advocates and working with Congressional Staff to introduce & pass legislation

  6. CureTheProcess: Improving the FDA Regulatory Process

    Building a grassroots coalition to move a policy discussion to successful legislation

    Emil Kakkis, MD, PhD, EveryLife Foundation for Rare Diseases

  7. Rare Disease Congressional Caucus

    • Helen Dwight, Office of Rep. Lance (R-NJ)
    • Nicole Cohen, Office of Rep. Crowley (D-NY)
  8. Overview of the Political & Legislative Process

    Make up of 113th Congress

    Jen Bernstein, JC White Consulting

  9. Health Funding: The Budget and Appropriations Process

    Updates on FDA, NIH funding and the threat of Sequestration

  10. Health Reform Overview

    State Based Exchanges and Essential Health Benefits

    Joel White, Council for Affordable Health Coverage

  11. Engaging Government Agencies

    Working to expand newborn screening

    Jim Bialick, Newborn Coalition

  12. Rare Disease Awareness: Genes Ribbons on the Hill

    Nicole Boice, Global Genes Project

Thank You to our Event Sponsors:

Conference Sponsors [/raw]

Webinar: The 113th Congress and Medical Research Funding: A Perfect Storm Approaching?

This is no garden-variety budget year in Washington – a tsunami of budget and fiscal issues threaten federal science programs. While Congress has pushed the date of the “sequester” off until the beginning of March, delaying the prospect of automatic 8.2 percent cuts in the budgets of NIH, FDA, and other agencies, it is not entirely off the table. Current funding for these programs expires in March, the fiscal year 2014 budgets are being drafted, and there will likely be a fight over the debt ceiling.  This Webinar will tell you what you need to know about what could happen on Capitol Hill, when, and who the important players are, including some new faces.

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Campaign to Educate State Legislators for Rare Disease Day

NORD would like to see activities conducted at state capitols and state houses around the country to help raise awareness of issues that are relevant at the state level. This project is modeled after a very successful Massachusetts State House Rare Disease Day event organized by Blair Van Brunt of the Shwachman-Diamond Syndrome Foundation and Sarah MacDonald of the Massachusetts Biotechnology Council.  To raise awareness of rare disease issues among state legislators, patient organizations and companies work together to plan and organize this event.

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Election 2012: Your Candidates Your Health

Where Do Your Candidates Stand on Biomedical Research Funding?

Despite the fact that Americans consistently describe medical, health, and scientific research as important to them, just eight percent say they are very well informed about their elected officials’ positions on these issues. Research!America sponsors a voter education initiative, Your Candidates – Your Health, that gets candidates on the record with their views on health and biomedical research.

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What is a Caucus?

A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. The most common caucuses consist of members united as an interest group. A Caucus can hold briefings to raise awareness on an issue. However, briefings are not actionable, ie: no bills can be introduced or voted on. A Caucus may join Members together in a voting block to support or oppose legislation, however most interest group caucuses are used to gain media attention and raise public awareness. Congressional Caucuses must be re-filed in the House at the start of each new Congress. The filing papers must be submitted by the majority party, which is currently the Republicans.