One Rare

Our mission is to improve the lives and advance the futures of young adults living with rare conditions through education, recreation, and peer support.

[One Rare @One_Rare_]

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

[Neena Nizar @NeenaNizar]

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

[Neena Nizar @NeenaNizar]

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.

[One Rare @One_Rare_]

@taylorkane23 Love it!!

[One Rare @One_Rare_]

Calling all young adult rare patients in the Philly area !! @_OurOdyssey_ 2nd meetup - be there or be square!

[Our Odyssey @_OurOdyssey_]

Our second young adult meet up in Philly is happening next Thursday, October 3rd! Don’t forget to register for this free event and help us spread the word 🙌 #Rarediseases #chronicillness #peersupport #patientjourney #ourodyssey
https://t.co/TPLx5sWedy

[TheRareFair @therarefair]

We are thrilled to have @RarePOV joining us at #TheRareFair on 9.27.19. Stephanie is a highly sought after speaker and knowledgeable #raredisease advocate. Thanks for what you do for the #rarecommunity! #welcometothetable

[One Rare @One_Rare_]

Feelings about price transparency?? Contact @LillyStairs a fantastic advocate to have your voice heard!

[Lilly Stairs @LillyStairs]

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?

[Rare Advocacy Movement @RareAdvocacy]

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!

[Stephanie Fischer @RarePOV]

.@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

[One Rare @One_Rare_]

Heard at #2019ggsummit: No one’s disease is more or less impactful or debilitating and that’s what brings us all together.”

[Swapna Kakani, MPH @SwapnaSpeaks]

The value of being transparent with your significant other @Srotberg15 @TeamCaleigh #2019GGSummit

[Rare Advocacy Movement @RareAdvocacy]

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