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 3 weeks ago Luke Rosen KIF1A.org New York, NY
233 1 month ago Sarah Tompkins RDLA Patient Advocate for Ehlers Danlos Syndrome Bellevue , WA
232 1 month ago Dayna Lancaster Dysautonomia Advocacy Foundation Escondido , CA
231 1 month ago Aurora Richards-Stipnieks The Coalition Against Pediatric Pain Medfield, MA
230 1 month ago JayEtta Hecker Wishes for Elliott: Advancing SCN8A Research Washington, DC
229 1 month ago Beverley J Ahmann Dignam Dysautonomia International Aurora, CO
228 1 month ago Shelby Richeson Dysautonomia Advocacy Foundation Fallbrook, CA
227 1 month ago Benito Loera Achalasia Awareness Organization Brownsville , TX
226 1 month ago Meagan Dix NIH Clearwater, FL
225 1 month ago Allyson Buck VWM Families Foundation Greenwich, CT
224 1 month ago Nancy Lazarus Achalasia Awareness Organization Los Angeles, CA
223 1 month ago Wendy Ferguson Abby Grace Foundation Dallas, NC
222 1 month ago Sarah Tompkins RDLA Patient Advocate for Ehlers Danlos Syndrome Bellevue , WA
221 1 month ago Heather Kirkwood HPS Network Inc. Arlington, VA
220 2 months ago Jane Bontrager Leukemia & Lymphoma Soc. LITTLE ROCK, AR
219 2 months ago Tara Voogel http://gne-myopathy.org/ Royal Oaks, CA
218 2 months ago Keetha Schaeffer CVS Speaks Deerfield Beach, FL
217 2 months ago Nadia Bodkin EDSers United Plainsboro, NJ
216 2 months ago Ainsley Glenn Dysautonomia Advocacy Foundation Charleston, SC
215 2 months ago Luke Rosen KIF1A.org New York, NY
214 2 months ago Rosetta Higgins Roses for Sarcoidosis Indianapolis , IN
213 2 months ago Patrick Wildman Lupus Foundation of America Washington, DC
212 2 months ago Charles Mohan, Jr United Mitochondrial Disease Foundation Pittsburgh, PA
211 2 months ago Lee Kolakowski FSH Society Inc. Olney, MD
210 2 months 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!