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 233 signatures
Number Date Name Organization Location
233 1 week ago Sarah Tompkins for Ehlers Danlos Syndrome Bellevue , WA
232 3 weeks ago Dayna Lancaster Dysautonomia Advocacy Foundation Escondido , CA
231 4 weeks ago Aurora Richards-Stipnieks The Coalition Against Pediatric Pain Medfield, MA
230 4 weeks ago JayEtta Hecker Wishes for Elliott: Advancing SCN8A Research Washington, DC
229 4 weeks ago Beverley Dignam Dysautonomia International Aurora, CO
228 4 weeks ago Shelby Richeson Dysautonomia Advocacy Foundation Fallbrook, CA
227 4 weeks ago Benito Loera Achalasia Awareness Organization Brownsville , TX
226 4 weeks ago Meagan Dix NIH Clearwater, FL
225 4 weeks ago Allyson Buck VWM Families Foundation Greenwich, CT
224 4 weeks ago Nancy Lazarus Achalasia Awareness Organization Los Angeles, CA
223 4 weeks ago Wendy Ferguson Abby Grace Foundation Dallas, NC
222 4 weeks ago Sarah Tompkins for Ehlers Danlos Syndrome Bellevue , WA
221 4 weeks ago Heather Kirkwood HPS Network Inc. Arlington, VA
220 1 month ago Jane Bontrager Leukemia & Lymphoma Soc. LITTLE ROCK, AR
219 1 month ago Tara Voogel http://gne-myopathy.org/ Royal Oaks, CA
218 1 month ago Keetha Schaeffer CVS Speaks Deerfield Beach, FL
217 1 month ago Nadia Bodkin EDSers United Plainsboro, NJ
216 1 month ago Ainsley Glenn Dysautonomia Advocacy Foundation Charleston, SC
215 1 month ago Luke Rosen KIF1A.org New York, NY
214 1 month ago Rosetta Higgins Roses for Sarcoidosis Indianapolis , IN
213 1 month ago Patrick Wildman Lupus Foundation of America Washington, DC
212 1 month ago Charles Mohan, Jr United Mitochondrial Disease Foundation Pittsburgh, PA
211 1 month ago Lee Kolakowski FSH Society Inc. Olney, MD
210 1 month ago Sue Landgraf Cystic Fibrosis Research, Inc. (CFRI) Palo Alto, CA
209 1 month ago Kathleen Higgins Mo songs for Kerry.org Athens, PA
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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!