If you’re #undiagnosed and struggling to find a diagnosis, you’re not alone. Millions of us have been lost in the gaps in the medical system. Our #documentary, #UndiagnosedFilm, tells four families’ stories, but many more remain untold. #rarediseases
https://t.co/3N8EjgCxHs
Our second cycle of the #RareAsOne Network RFA for #RareDisease patient organizations is now open. Please help us get the word out! https://t.co/lq0dg9I2R8
It's not too late to register for Sanford CoRDS Virtual Rare Disease Day Summit Fri, Oct 16.
Check out the event and register here 👉https://t.co/D9N8zFiDCE #raredisease#sanfordresearch
If you're in PHX Mon 8/17, visit @portilloshotdog Avondale betw 3-9PM, mention TEAM 4 Travis when ordering. Portillo's donates 20% of proceeds to help T4T mission (fundraiser available in drive-thru only to allow safe social distancing). Honor Travis's 6th birthday & do good.
Join our next virtual RPM® #GrandRounds session: Genomic Sequencing & Autonomy: Diving into the Ethics of Informed Consent Challenges, featuring a case study & Q&A with Ryan Spellecy, PhD (@rbspell). 8/26, 5pm PDT. https://t.co/gGf1brWBP9 #RapidPrecisionMedicine#GenomicMedicine
#PCORI2020 registration is open! Have you signed up to join us yet? Plenary topics are on implementing evidence within and across health systems and Congressional perspectives on health disparities. Explore the agenda to see what else we have planned. https://t.co/SiwyEBjcgP
Great being part of this group of passionate @rareadvocates, knowing that Sylvia Lee of @kyrstensinema office helps carry our voices to the Senator, who continues advocating for her Arizona Rare constituents.
Register today for the next RARE Leader Meetup, "Balancing School and Work at Home" on August 19. Not a RARE Foundation Alliance member? It's free to join. #CareAboutRare#rarediseaseawareness https://t.co/JwKVSqlzbQ
We want every boy and girl to feel they can smile with confidence. Ask Your Legislators in Washington D.C. to Co-Sponsor The Ensuring Lasting Smiles Act (ELSA) because #teetharenotcosmetic. https://t.co/owWnl7pDxp
Dear Friends, @PCORI 's new on-demand training allows users to learn about the health research process and become involved in patient-centered outcomes research. Check it out here. https://t.co/9Qbbw1MXHH via @PCORI
Advice from #raredisease advocate Colleen Brunetti: "...never back down. Keep putting yourself in situations where you might end up in front of people who need to hear what you have to say." #LivingRareForum
The #RAREis Scholarship Fund is now available! We’ve partnered w/ @everylifeorg to provide this much needed resource for people living w/ #rarediseases & navigating obstacles in accessing education. Learn more & apply before Aug. 28: https://t.co/N7tKAsE70T.
Did you know that RDMD's service is offered at no cost to patients, caregivers and parents? If you want to learn more about how RDMD is making it easy for #raredisease patients and families to contribute to drug research from home, contact us at [email protected]!
It is all too easy to take speaking, chewing, and swallowing for granted. These functions are an everyday challenge for those affected by #ectodermaldysplasia. Learn how you can make a difference in their lives by supporting the #EnsuringLastingSmiles Act. https://t.co/Fu74xgw7kV
Learn about high resolution molecular modeling, a flexible approach that can be leveraged by biopharma teams to generate insights for drug repurposing, target pathway selection & other challenges. Thursday, July 16 at 9am PT, 12pm ET, 6pm CET. Register: https://t.co/cQdNtujpeY
1/4 If you or someone in your family has a rare disease, we want YOU to take the National Burden of Rare Disease Survey. The EveryLife Foundation for Rare Diseases in collaboration with the rare disease community has worked with health economists to develop the #burdenstudy