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 4 months ago Luke Rosen KIF1A.org New York, NY
233 5 months ago Sarah Tompkins Rare Disease Legislative Advocacy Bellevue, WA
232 5 months ago Dayna Lancaster Dysautonomia Advocacy Foundation Escondido , CA
231 6 months ago Aurora Richards-Stipnieks The Coalition Against Pediatric Pain Medfield, MA
230 6 months ago JayEtta Hecker Wishes for Elliott: Advancing SCN8A Research Washington, DC
229 6 months ago Beverley J Ahmann Dignam Dysautonomia International Aurora, CO
228 6 months ago Shelby Richeson Dysautonomia Advocacy Foundation Fallbrook, CA
227 6 months ago Benito Loera Achalasia Awareness Organization Brownsville , TX
226 6 months ago Meagan Dix NIH Clearwater, FL
225 6 months ago Allyson Buck VWM Families Foundation Greenwich, CT
224 6 months ago Nancy Lazarus Achalasia Awareness Organization Los Angeles, CA
223 6 months ago Wendy Ferguson Abby Grace Foundation Dallas, NC
222 6 months ago Sarah Tompkins Rare Disease Legislative Advocacy Bellevue, WA
221 6 months ago Heather Kirkwood HPS Network Inc. Arlington, VA
220 6 months ago Jane Bontrager Leukemia & Lymphoma Soc. LITTLE ROCK, AR
219 6 months ago Tara Voogel http://gne-myopathy.org/ Royal Oaks, CA
218 6 months ago Keetha Schaeffer CVS Speaks Deerfield Beach, FL
217 6 months ago Nadia Bodkin EDSers United Plainsboro, NJ
216 6 months ago Ainsley Glenn Dysautonomia Advocacy Foundation Charleston, SC
215 6 months ago Luke Rosen KIF1A.org New York, NY
214 6 months ago Rosetta Higgins Roses for Sarcoidosis Indianapolis , IN
213 6 months ago Patrick Wildman Lupus Foundation of America Washington, DC
212 6 months ago Charles Mohan, Jr United Mitochondrial Disease Foundation Pittsburgh, PA
211 6 months ago Lee Kolakowski FSH Society Inc. Olney, MD
210 6 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!