PROS Foundation

[UNDIAGNOSED @UndiagnosedFilm]

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

[PROS Foundation @PROS_Foundation]

So happy to finally meet this GCDMP guru in person. Thank you, Meredith and love the hint to complete the questionnaire. #SCDM2022

[Chan Zuckerberg Initiative @ChanZuckerberg]

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

[Jean Campbell @JFCConsultants]

#raredisease @PPALSorg @teaminspire @SanfordCoRDS @EparentConnect @RobertTomaino Be sure to sign up for @SanfordResearch Virtual Rare Disease Summit! Focus of discussions is on #lysosomalstoragediseases @FabryOrg

[Sanford Research @SanfordResearch]

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

[PROS Foundation @PROS_Foundation]

All our Arizona Friends - Spreading @portilloshotdog goodness for even MORE goodness for @team4travis and give your kitchen a break while helping progress for #aspleniaresearch

[team4travis @team4travis]

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.

[Rady Genomics @RadyGenomics]

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

[The Patient-Centered Outcomes Research Institute @PCORI]

#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

[team4travis @team4travis]

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.

[Global Genes @GlobalGenes]

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

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

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

[PROS Foundation @PROS_Foundation]

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

[Jean Campbell @JFCConsultants]

@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. https://t.co/BMLJ3cNLMW

[AllStripes @_allstripes]

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

[Jean Campbell @JFCConsultants]

#raredisease @PPALSorg @UpliftingAth @EparentConnect @teaminspire @GlobalGenes Los Angeles Dodgers Foundation Invites Applications From Local Nonprofit Organizations | RFPs | PND https://t.co/awpGlxs3ry

[Horizon @HorizonNews]

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.

[AllStripes @_allstripes]

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]!

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

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

[Precision for Medicine @Precision4Med]

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

[EveryLife Foundation @EveryLifeOrg]

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