ACTION NEEDED.
In response to the FDA’s draft guidance on Expedited Programs for Serious Conditions, Representatives Gus Bilirakis (R-FL), GK Butterfield (D-NC), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) are circulating a bipartisan letter in Congress calling on the FDA ensure the final guidance fully implements FDASIA to give rare diseases access to Accelerated Approval. Because of the support of the patient community, 109 Members of Congress have signed onto the letter.
Congress is now asking patient organizations to join them in signing onto the letter. Read the letter, FDA Guidance Response – Accelerated Approval, from Congress and sign on by replying to this email or emailing lwhite@rareadvocates.org with your organization’s name, city and state. Deadline for patient organizations to sign onto the letter is September 6th.
Below is a list of Members of Congress who have signed on. If you do not see your Member of Congress listed, there is still time for them to add their name. We encourage you to request a meeting with your Member of Congress during August recess. Members of Congress will be holding district office hours to meet with their constituents through Sept. 6th. If you would like assistance with setting up a meeting, please contact jjenkins@rareadvocates.org. If you are not available to meet with your Member of Congress you can call them using this link: http://bit.ly/AA4RDNOW. To find out more about this issue go to: EveryLifeFoundation.org
Congressional Letter Cosigners
1. Gus Bilirakis (R-FL)
2. GK Butterfield (D-NC)
3. Ileana Ros-Lehtinen (R-FL)
4. Jim Moran (D-VA)
5. Marsha Blackburn (R-TN)
6. Mike McCaul (R-TX)
7. Jared Huffman (D-CA)
8. Matthew Cartwright (D-PA)
9. Lou Barletta (R-PA)
10. John Carter (R-TX)
11. Jared Polis (D-CO)
12. Mike Michaud (D-ME)
13. Wm. Lacy Clay (D-MO)
14. Michael Burgess (R-TX)
15. Kerry Bentivolio (R-MI)
16. Chris Collins (R-NY)
17. Robert Pittenger (R-NC)
18. Andre Carson (D-IN)
19. John Carney (D-DE)
20. Michael Fitzpatrick (R-PA)
21. Tom Petri (R-WI)
22. David Joyce (R-OH)
23. Sheila Jackson-Lee (D-TX)
24. Terri Sewell (D-AL)
25. Kenny Marchant (R-TX)
26. Bill Cassidy (R-LA)
27. Julia Brownley (D-CA)
28. Bill Owens (I-NY)
29. Carolyn Maloney (D-NY)
30. Doris Matsui (D-CA)
31. Jim Langevin (D-RI)
32. Peter Roskam (R-IL)
33. Mario Diaz-Balart (R-FL)
34. Greg Harper (R-MS)
35. Gloria Negrete McLeod (D-CA)
36. K. Michael Conaway (R-TX)
37. Vern Buchanan (R-FL)
38. Andrew Harris (R-MD)
39. Bill Foster (D-IL)
40. Frank Wolf (R-VA)
41. Joe Garcia (D-FL)
42. Danny Davis (D-IL)
43. Bill Posey (R-FL)
44. Donald Payne (D-NJ)
45. Stephen Fincher (R-TN)
46. Colin Peterson (D-MN)
47. Bill Shuster (R-PA)
48. Mick Mulvaney (R-SC)
49. Corrine Brown (D-FL)
50. David Schweikert (R-AZ)
51. Adam Smith (D-WA)
52. Leonard Lance (R-NJ)
53. Juan Vargas (D-CA)
54. Tony Cardenas (D-CA)
55. Madeleine Bordallo (D-Guam)
56. Cathy McMorris Rodgers (R-WA)
57. Ruben Hinojosa (D-TX)
58. Eddie Bernice Johnson (D-TX)
59. Theodore Deutch (D-FL)
60. Lee Terry (R-NE)
61. Blaine Luetkemeyer (R-MO)
62. Brett Guthrie (R-KY)
63. Richard Hanna (R-NY)
64. Alan Grayson (D-FL)
65. Bill Young (R-FL)
66. Susan Brooks (R-IN)
67. Shelley Moore Capito (R-WV)
68. Joyce Beatty (D-OH)
69. Rodney Davis (R-IL)
70. Glenn Thompson (R-PA)
71. Pete Sessions (R-TX)
72. Kathy Castor (D-FL)
73. Peter King (R-NY)
74. Zoe Lofgren (D-CA)
75. Aaron Schock (R-IL)
76. Joseph Crowley (D-NY)
77. Renee Ellmers (R-NC)
78. Matt Salmon (R-AZ)
79. Rick Crawford (R-AR)
80. Bill Johnson (R-OH)
81. Jim Gerlach (R-PA)
82. Dutch Ruppersberger (D-MD)
83. Frederica Wilson (D-FL)
84. Pete Olson (R-TX)
85. Bruce Braley (D-IA)
86. Tom Rooney (R-FL)
87. John Mica (R-FL)
88. Charles Dent (R-PA)
89. Eni Faleomavaega (D-American Samoa)
90. Bob Latta (R-OH)
91. Kevin McCarthy (R-CA)
92. Morgan Griffith (R-VA)
93. Dan Lipinski (D-IL)
94. Phil Gingrey (R-GA)
95. Walter Jones (R-NC)
96. Gerald Connolly (D-VA)
97. Ted Yoho (R-FL)
98. Carol Shea-Porter (D-NH)
99. Jeff Miller (R-FL)
100. Sean Patrick Maloney (D-NY)
101. Tim Murphy (R-PA)
102. Patrick Murphy (D-PA)
103. James Lankford (R-OK)
104. Lynn Jenkins (R-KS)
105. Adam Kinzinger (R-IL)
106. John Culberson (R-TX)
107. Billy Long (R-MO)
108. Rush Holt (D-NJ)
109. Michelle Lujan Grisham (D-NM)
Patient Organization Cosigners
1. Abigail Alliance for Better Access to Developmental Drugs (VA)
2. Acid Maltase Deficiency Association (TX)
3. American Behcet’s Disease Association (ABDA), (MI)
4. Addi & Cassi Fund (NV)
5. A-T Children’s Project (FL)
6. Brian’s Hope (CT)
7. BDSRA (Batten Disease Support & Research Association) (FL)
8. Celiac Sprue Association (NE)
9. Charcot-Marie-Tooth Association (IL)
10. Children’s Cardiomyopathy Foundation (NJ)
11. Children’s PKU Network (Phenylketonuria) (CA)
12. Children’s Tumor Foundation (NY)
13. CARES Foundation, Inc. (NJ)
14. CureDuchenne (CA)
15. Drew’s Hope Research Foundation (PA)
16. EveryLife Foundation for Rare Diseases (CA)
17. FMDSA (OH)
18. Gene Spotlight Inc. (FL)
19. Global Genes | RARE Project (CA)
20. GT23 Foundation (NV)
21. Hannah’s Hope Fund (NY)
22. Hayden’s Batten Disease Foundation Inc. (WI)
23. Huntington’s Disease Society of America (NY)
24. I HAVE IIH (Idiopathic Intracranial Hypertension (OH)
25. In Need of Diagnosis, Inc. (FL)
26. International Pemphigus & Pemphigoid Foundation (CA)
27. International Rett Syndrome Foundation (OH)
28. International Scleroderma Network (MN)
29. IPH-NET (Idiopathic Pulmonary Hemosiderosis) (MO)
30. Jonah’s Just Begun NY
31. Kids With Heart National Association for Children’s Heart Disorders, Inc (WI)
32. Kortney Rose Foundation (NJ)
33. LAL Solace (AL)
34. Let Them Be Little X2 Foundation (NJ)
35. LGS Foundation (NY)
36. Life Raft Group (NJ)
37. Lipodystrophy United (NM)
38. Little Miss Hannah Foundation (NV)
39. Mastocytosis Society (DC)
40. MLD Foundation (Metachromatic Leukodystrophy) (OR)
41. Multiple System Atrophy Coalition (NC)
42. National Fragile X (MI)
43. National Gaucher Foundation (GA)
44. National MPS Society (NC)
45. National Tay-Sachs & Allied Diseases Association (MA)
46. Noah’s Hope (IL)
47. NOMID Alliance (CA)
48. Parent Project Muscular Dystrophy (NJ)
49. Phelan-McDermid Syndrome Foundation (FL)
50. Ryan Foundation for Orphan Disease Research (TX)
51. Sanfilippo Foundation for Children (TX)
52. Sarcoma Alliance (CA)
53. Sarcoma Foundation of America (MD)
54. SPOHNC (Support For People With Oral And Head And Neck Cancer) (NY)
55. SSADH (Succinic Semialdehyde Dehydrogenase Deficiency) Association (TX)
56. Taylor’s Tale (NC)
57. Team Sanfilippo Foundation (NY)
58. United Pompe Foundation (CA)
59. Wilson Disease Association (WI)
60. National Down Syndrome Society (NY)
Thank you for taking action to help spur the development of safe and effective treatments for rare disease patients.
