Our mission is to improve the lives and advance the futures of young adults living with rare conditions through education, recreation, and peer support.
Are you a young adult living with #rare between 18-35? Meet like minded peers, learn unique crafts, and get informed to advocate for you! Reg ends 8/1 - click “join us” to apply and agenda for our speaker lineup. #rardisease#patientdriven https://t.co/fVPWsgTOpb
How much does ur advocacy affect your personal n professional life? I'm finding my persistence n resilience labeled "threatening" n "agressive" in general non-adv related meetings where lives r not at stake. How does one reconcile the two lives? @livinlavidalopo#alwaysanadvocate
No chance of breaking my wheelchair as the ONLY virtual rare disease conference doesn't require anyone to leave the comfort of his/her home! How cool is that! Join me at #TheRairFair @MyCityMed as we chat about the challenges of translational research.
Friends! I'm representing the patient perspective in a webinar on price transparency in healthcare in a few weeks. As always, I like to bring collective voices to the table, not just my own. What are your thoughts on Trumps executive order for price transparency?
Today is #WorldNarcolepsyDay which unites people with #narcolepsy, their families & researchers from around the world to raise awareness & reduce the stigma around sleep disorders. We are proud of RAM member @Sleepy_Shannon3 who advocates with @project_sleep & @NarcolepsyNtwrk!
.@onnofaber of @rdmd talks about living life to the fullest in the face of uncertainty of the progression of #RareDisease, which in his case is taking singing lessons. Learn more about his experience at https://t.co/TBacYaJhYs. #2019GGSummit
RAM member @GayGrossman of @adcy5 is sharing insights on navigating private, state & federal programs for health & education based on her experience with her daughter who is an adult living with a #RareDisease. #2019GGSummit