Sign on to support an end to the NIH/FDA hiring freeze!

President Trump instituted an immediate hiring freeze on January 23rd, signing a presidential memorandum that would affect a large swath of the executive branch including the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Unfortunately, this freeze will significantly hamper research into rare disease treatments and the subsequent approval process. We are seeking patient organizations to have our voice heard. 

Sign your patient organization on to the letter below and lend your support to ensuring that the NIH and FDA have the resources they need to support rare disease patients!


1-25 of 234 signatures
Number Date Name Organization Location
234 2 years ago Luke Rosen Ovid Therapeutics New York, NY
233 2.1 years ago Sarah B Tompkins RDLA Ehlers Danlos Syndrome Patient Advocate and Founder of EDS Bellevue, WA
232 2.1 years ago Dayna Lancaster Dysautonomia Advocacy Foundation Escondido , CA
231 2.1 years ago Aurora Richards-Stipnieks The Coalition Against Pediatric Pain Medfield, MA
230 2.1 years ago JayEtta Hecker Wishes for Elliott: Advancing SCN8A Research Washington, DC
229 2.1 years ago Beverley Dignam Self- Dysautonomia Sun City , AZ
228 2.1 years ago Shelby Richeson Dysautonomia Advocacy Foundation Fallbrook, CA
227 2.1 years ago Benito Loera Achalasia Awareness Organization Brownsville , TX
226 2.1 years ago Meagan Dix NIH Clearwater, FL
225 2.1 years ago Allyson Buck VWM Families Foundation Greenwich, CT
224 2.1 years ago Nancy Lazarus Achalasia Awareness Organization Los Angeles, CA
223 2.1 years ago Wendy Ferguson Abby Grace Foundation Dallas, NC
222 2.1 years ago Sarah B Tompkins RDLA Ehlers Danlos Syndrome Patient Advocate and Founder of EDS Bellevue, WA
221 2.1 years ago Heather Kirkwood Hermansky-Pudlak Syndrome Network Arlington, VA
220 2.1 years ago Jane Bontrager Leukemia & Lymphoma Soc. LITTLE ROCK, AR
219 2.1 years ago Tara Voogel http://gne-myopathy.org/ Royal Oaks, CA
218 2.1 years ago Keetha Schaeffer CVS Speaks Deerfield Beach, FL
217 2.1 years ago Nadia Bodkin EDSers United Plainsboro, NJ
216 2.1 years ago Ainsley Glenn Dysautonomia Advocacy Foundation Charleston, SC
215 2.1 years ago Luke Rosen Ovid Therapeutics New York, NY
214 2.1 years ago Rosetta Higgins Roses for Sarcoidosis Indianapolis , IN
213 2.1 years ago Patrick Wildman Lupus Foundation of America Washington, DC
212 2.1 years ago Charles Mohan, Jr United Mitochondrial Disease Foundation Pittsburgh, PA
211 2.1 years ago Lee Kolakowski FSH Society Inc. Olney, MD
210 2.1 years ago Sue Landgraf Cystic Fibrosis Research, Inc. (CFRI) Palo Alto, CA
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 We will be accepting sign-ons until February 24th from patient organizations ONLY. Please share with your networks and on social media!