Join us on 5/17 for Community Conversations - Legislative Advocacy for PSP, CBD and MSA. Our guest speakers will share their experiences and insights on creating change in our community. Let's make a difference together! Register today! give.curepsp.org/event/communit… #HopeInAction

Sadly this is not surprisingly - the interim results for our #Rare Mental Health Survey 2023 show that 76.3% of respondents report never having #MentalHealth support or signposting offered by their health care providers. #MentalHealth #MentalHealthAwareness #RareMindsMatter

🌍💙Today is World NF Awareness Day!💙🌍 NF is a group of genetic disorders that cause tumors to grow on nerves. It affects millions of people worldwide, and today is about shining a spotlight on this important cause. makenfvisible.org #makenfvisible #endnf #iknowafighter

Today is #WorldNFDay. NF refers to neurofibromatosis type 1 and type 2, genetic conditions that cause tumors to grow on nerves throughout the body. Children's Tumor Fdn is working on their awareness campaign to ‘Make NF Visible.’ Learn more here: ctf.org/get-involved/m…

Today is #REDS4VEDS Day. Put on the red and let the whole world know to help raise awareness of vascular Ehlers-Danlos syndrome (vEDS).⁠ Wear something red, take a selfie & share it with #REDS4VEDS.⁠ Learn more about vEDS here: ehlers-danlos.org/what-is-eds/in… #vEDS #VascularEDS

Two of the rare conditions for which we have research programs, Morquio A & propionic acidemia (PCCB subtype), have been selected by the FNIH to be part of its Accelerating Medicines Partnership® Bespoke Gene Therapy Consortium clinical trial portfolio. fnih.org/news/press-rel…

#FACT: Tumors from schwannomatosis may cause pain that can be extremely difficult to manage. More NF Facts at ctf.org/facts. More ways to #MakeNFVisible at makenfvisible.org. #endnf #schwannomatosis #swn