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 8 months ago Luke Rosen KIF1A.ORG, Inc New York, NY
233 9 months ago Sarah Tompkins Rare Disease Legislative Advocacy Bellevue, WA
232 9 months ago Dayna Lancaster Dysautonomia Advocacy Foundation Escondido , CA
231 9 months ago Aurora Richards-Stipnieks The Coalition Against Pediatric Pain Medfield, MA
230 10 months ago JayEtta Hecker Wishes for Elliott: Advancing SCN8A Research Washington, DC
229 10 months ago Beverley J Ahmann Dignam Dysautonomia International Aurora, CO
228 10 months ago Shelby Richeson Dysautonomia Advocacy Foundation Fallbrook, CA
227 10 months ago Benito Loera Achalasia Awareness Organization Brownsville , TX
226 10 months ago Meagan Dix NIH Clearwater, FL
225 10 months ago Allyson Buck VWM Families Foundation Greenwich, CT
224 10 months ago Nancy Lazarus Achalasia Awareness Organization Los Angeles, CA
223 10 months ago Wendy Ferguson Abby Grace Foundation Dallas, NC
222 10 months ago Sarah Tompkins Rare Disease Legislative Advocacy Bellevue, WA
221 10 months ago Heather Kirkwood HPS Network Inc. Arlington, VA
220 10 months ago Jane Bontrager Leukemia & Lymphoma Soc. LITTLE ROCK, AR
219 10 months ago Tara Voogel http://gne-myopathy.org/ Royal Oaks, CA
218 10 months ago Keetha Schaeffer CVS Speaks Deerfield Beach, FL
217 10 months ago Nadia Bodkin EDSers United Plainsboro, NJ
216 10 months ago Ainsley Glenn Dysautonomia Advocacy Foundation Charleston, SC
215 10 months ago Luke Rosen KIF1A.ORG, Inc New York, NY
214 10 months ago Rosetta Higgins Roses for Sarcoidosis Indianapolis , IN
213 10 months ago Patrick Wildman Lupus Foundation of America Washington, DC
212 10 months ago Charles Mohan, Jr United Mitochondrial Disease Foundation Pittsburgh, PA
211 10 months ago Lee Kolakowski FSH Society Inc. Olney, MD
210 10 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!