Our mission is to improve the lives and advance the futures of young adults living with rare conditions through education, recreation, and peer support.
Joined September 2019
- Tweets 12
- Following 96
- Followers 248
- Likes 13
1 Photos and videos
22 Jul 2020
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 onerare.org/
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One Rare retweeted
22 Jul 2020
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
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One Rare retweeted
24 Sep 2019
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.
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24 Sep 2019
Calling all young adult rare patients in the Philly area !! @_OurOdyssey_ 2nd meetup - be there or be square!
24 Sep 2019
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
eventbrite.com/e/our-odyssey…
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One Rare retweeted
22 Jul 2019
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
22 Jul 2019
Honored to join fellow #raredisease advocates as speakers at the Medical Affairs in Rare Diseases Forum hosted by @The_ACMA.
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24 Sep 2019
Feelings about price transparency?? Contact @LillyStairs a fantastic advocate to have your voice heard!
23 Sep 2019
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?
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One Rare retweeted
22 Sep 2019
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!
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One Rare retweeted
19 Sep 2019
.@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 medium.com/neodotlife/onno-f…. #2019GGSummit
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19 Sep 2019
Heard at #2019ggsummit: No one’s disease is more or less impactful or debilitating and that’s what brings us all together.”
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19 Sep 2019
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19 Sep 2019
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
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