PROS Foundation retweeted
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
undiagnosedfilm.com/
PROS Foundation retweeted
Our second cycle of the #RareAsOne Network RFA for #RareDisease patient organizations is now open. Please help us get the word out! czi.co/RareAsOneRFA
PROS Foundation retweeted
#raredisease @PPALSorg @teaminspire @SanfordCoRDS @EparentConnect @RobertTomaino Be sure to sign up for @SanfordResearch Virtual Rare Disease Summit! Focus of discussions is on #lysosomalstoragediseases @FabryOrg
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 👉bit.ly/2Fj4T64 #raredisease #sanfordresearch
PROS Foundation retweeted
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 👉bit.ly/2Fj4T64 #raredisease #sanfordresearch
PROS Foundation retweeted
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. bit.ly/2XGlQMV #RapidPrecisionMedicine #GenomicMedicine
PROS Foundation retweeted
#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. pcori.me/PAM2020
PROS Foundation retweeted
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.
PROS Foundation retweeted
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 globalgenes.org/rare-leader-…
PROS Foundation retweeted
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. nfed.org/get-involved/advoca…
PROS Foundation retweeted
@PPALSorg @teaminspire @SanfordCoRDS #cystinosis @EparentConnect @_OurOdyssey_ #RareDiseases @CystinosisCRN Making a recommendation to view this documentary 'Walk in My Shoes' It's an important and inspiring message delivered honestly & from the heart. youtube.com/watch?v=YHnoBbbg…
PROS Foundation retweeted
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
PROS Foundation retweeted
#raredisease @PPALSorg @UpliftingAth @EparentConnect @teaminspire @GlobalGenes Los Angeles Dodgers Foundation Invites Applications From Local Nonprofit Organizations | RFPs | PND fw.to/iLzKqUJ
PROS Foundation retweeted
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: bit.ly/2OlZX1d.
PROS Foundation retweeted
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 support@rdmd.com!
PROS Foundation retweeted
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. nfed.org/get-involved/advoca…
PROS Foundation retweeted
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: event.on24.com/wcc/r/2428336…
PROS Foundation retweeted
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
PROS Foundation retweeted
Insurance companies say that the smiles of those affected by ectodermal dysplasias are cosmetic, but #EnsuringLastingSmiles Act advocates disagree! Ask Your Legislators in Washington D.C. to Co-Sponsor The Ensuring Lasting Smiles Act (ELSA) nfed.org/get-involved/advoca…
PROS Foundation retweeted
Eric T Wong, MD, Associate Professor at @harvardmed discusses some of the reasons that patients may be interested in participating in a clinical trial, especially one involving a #raredisease. @harvardmed #clinicaltrial
checkrare.com/why-do-patient…
PROS Foundation retweeted
Raise your voice for NFED's Virtual Advocacy Day! Let's get the #EnsuringLastingSmiles Act passed because individuals with congenital anomalies deserve to have teeth!
ow.ly/IMKS50Ag2sw
