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 1 year ago Luke Rosen Ovid Therapeutics New York, NY
233 1 year ago Sarah Tompkins RDLA Patient advocacy Bellevue, WA
232 1 year ago Dayna Lancaster Dysautonomia Advocacy Foundation Escondido , CA
231 1 year ago Aurora Richards-Stipnieks The Coalition Against Pediatric Pain Medfield, MA
230 1 year ago JayEtta Hecker Wishes for Elliott: Advancing SCN8A Research Washington, DC
229 1 year ago Beverley J Ahmann Dignam Dysautonomia International Aurora, CO
228 1 year ago Shelby Richeson Dysautonomia Advocacy Foundation Fallbrook, CA
227 1 year ago Benito Loera Achalasia Awareness Organization Brownsville , TX
226 1 year ago Meagan Dix NIH Clearwater, FL
225 1 year ago Allyson Buck VWM Families Foundation Greenwich, CT
224 1 year ago Nancy Lazarus Achalasia Awareness Organization Los Angeles, CA
223 1 year ago Wendy Ferguson Abby Grace Foundation Dallas, NC
222 1 year ago Sarah Tompkins RDLA Patient advocacy Bellevue, WA
221 1 year ago Heather Kirkwood HPS Network Inc. Arlington, VA
220 1 year ago Jane Bontrager Leukemia & Lymphoma Soc. LITTLE ROCK, AR
219 1 year ago Tara Voogel http://gne-myopathy.org/ Royal Oaks, CA
218 1 year ago Keetha Schaeffer CVS Speaks Deerfield Beach, FL
217 1 year ago Nadia Bodkin EDSers United Plainsboro, NJ
216 1 year ago Ainsley Glenn Dysautonomia Advocacy Foundation Charleston, SC
215 1 year ago Luke Rosen Ovid Therapeutics New York, NY
214 1 year ago Rosetta Higgins Roses for Sarcoidosis Indianapolis , IN
213 1 year ago Patrick Wildman Lupus Foundation of America Washington, DC
212 1 year ago Charles Mohan, Jr United Mitochondrial Disease Foundation Pittsburgh, PA
211 1 year ago Lee Kolakowski FSH Society Inc. Olney, MD
210 1 year 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!