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There are so many ways that patients can drive forward drug development, beyond participating in trials. We need to understand the characteristics of each rare condition before we can design and carry out the most appropriate clinical trials.

"Dear Professors: I cannot do the work you think I can do, and I will not, either," writes Federico Perelmuter ‘21 in an open letter to Haverford faculty about the realities of COVID-19 and its effects on students. haverfordclerk.com/a-brief-letter…

Look at all these roses with petals on the ground. #IRunwithAhmaud

Hannah was an infant when she was diagnosed with #NF1 #WorldNFDay Read and share her story rdmd.com/blog/rare-diag…

A semi-truck just ran over protesters in Minneapolis. I don't want to hear about looting. I do not want to hear about looting. Fuck you if your coverage is more on the looting than on what is burning this country down from the inside.

Up to half of all police killings involve people with disabilities. Racial justice is disability justice.

the US continuing to perpetuate ableism 😡

Shout out to all the myopes

Was reminded today of the week at Capitol Hill advocating for #NFResearch Funding with some amazing young adults: Offices visited in the House of Reps- 435 Congressional Briefing - unsure of #, but standing room only Emails to offices- 435 Signatures 98

wish my hips would remember how to walk so I can throw my crutches away But in other news~ first day of med school with some great friends. Hoping to be like all my physicians, scientists, and advocates who helped me along my NF1 journey:)

Living with #NF1 means 20+ hour trips for clinical trial meds bc there are no sites nearby, studying for exams b/w appts and traveling, gearing up for a 5-hour lab right after landing🫠

fostering puppies to avoid med school responsibilities

Today, at the NF Congressional Briefing in Washington, D.C., speakers from CTF, CDMRP, nick, and NF patients highlighted how NF research is advancing care. We also announced the next phase of the biomarker initiative with @CureNFWithJack! #EndNF #NFResearch