One Rare
@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.
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@remember_girls
@lukebrosen
@RareAdvocacy
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@Srotberg15
@livinlavidalopo
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@FarnieVanHoutan
@dannys_dose
It’s great to see some young adult sessions in @GlobalGenes RARE Patient Advocacy (un)Summit agenda. Let’s continue to bring the young adult voice to the table! #wetacklerare #inthistogether globalgenes.org/summit-agenda/
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
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.
Calling all young adult rare patients in the Philly area !! @_OurOdyssey_ 2nd meetup - be there or be square!
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-…
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
Honored to join fellow #raredisease advocates as speakers at the Medical Affairs in Rare Diseases Forum hosted by @The_ACMA
Feelings about price transparency?? Contact @LillyStairs a fantastic advocate to have your voice heard!
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 medium.com/neodotlife/onn…. #2019GGSummit
Heard at #2019ggsummit: No one’s disease is more or less impactful or debilitating and that’s what brings us all together.”
The value of being transparent with your significant other @Srotberg15 @TeamCaleigh #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
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Who to follow
-
Remember The Girls
@remember_girls -
Luke Rosen
@lukebrosen -
Rare Advocacy Movement
@RareAdvocacy -
DISORDER: The Rare Disease Film Festival
@DisorderRare -
Seth Rotberg
@Srotberg15 -
Andra Stratton
@livinlavidalopo -
dazzle4rare
@dazzle4rare -
@raregivers
@raregivers -
Jen VanHoutan
@FarnieVanHoutan -
Danny's Dose
@dannys_dose
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