PROS Foundation @PROS_Foundation
Joined March 2017-
Tweets491
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Followers238
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Following216
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Likes3K
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
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So happy to finally meet this GCDMP guru in person. Thank you, Meredith and love the hint to complete the questionnaire. #SCDM2022
PROS Foundation retweeted
🎶 As to Boston he now returns 🎶 The @NIHDirector sang a tribute to NCATS Director, Dr. Christopher Austin, to celebrate his time at NCATS over the past decade and bid him farewell. Listen to the song and join us in wishing Dr. Austin well on his next endeavor!
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
#raredisease @PPALSorg @TeamInspire @SanfordCoRDS @EparentConnect @RobertTomaino Be sure to sign up for @SanfordResearch Virtual Rare Disease Summit! Focus of discussions is on #lysosomalstoragediseases @FabryOrg
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
All our Arizona Friends - Spreading @portilloshotdog goodness for even MORE goodness for @team4travis and give your kitchen a break while helping progress for #aspleniaresearch
All our Arizona Friends - Spreading @portilloshotdog goodness for even MORE goodness for @team4travis and give your kitchen a break while helping progress for #aspleniaresearch
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.
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-me…
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/a…
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. pcori.me/2Cy51gq via @PCORI
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=YHnoBb…
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 [email protected]!
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/a…
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/…
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15 Followers 491 Following Tata Motors Kaveri - For more details ,calll/Whatsapp9150011631
team4travis @team4travis
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PSP Society of Canada @PSPSocietyCDA
596 Followers 2K Following Serving Canadian patients & families dealing with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) & Corticobasal Degeneration (CBD)
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AllStripes @_allstripes
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MTM-CNM Connection @MTMCNMFamily
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CenterforChronicIllne... @CciSeattle
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EURORDIS-Rare Disease... @eurordis
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Beacon for Rare Disea... @RareBeacon
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Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
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Stephanie Fischer @RarePOV
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Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
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2K Followers 166 Following Helping and giving advice to people living with primary or secondary immunodeficiency. Arming them with the knowledge to manage their condition effectively.
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Cerebral Amyloid Angi... @CAAcure
304 Followers 341 Following 👩⚕️PA-C 🧠CAA can cause ICH & cognitive decline 🏈Quarterbacking researchers/physicians/patients for a science touchdown🧬🦓Rare CAA genetic mutation champ
ISurvivor Lisa Deck @lbdeck
1K Followers 1K Following ❤ Mom & Wife * Experienced Speaker & Patient Advocate * #StrokeSurvivor * Founder Sisters@Heart * #Moyamoya warrior; #RareDisease Fighter; #Heart Spokeswomen
Catherine Stratton, M... @cathsmstratton
2K Followers 2K Following Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafdn #KnowledgeTranslation #RareDisease #Pain #Disability
Timothy Syndrome Alli... @tsa_charity
349 Followers 1K Following Dedicated to improving the diagnosis, treatment & care of those living with #CACNA1C-related disorders inc. #TimothySyndrome and #LongQT8. @cacna1c.bsky.social
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53 Followers 275 Following I'm the president founder of Endosalpingiosis Foundation Inc🎗🎗 ✨#Endosalpingiosis Advocate, mother to an amazing son, 🍀☘🍀💚Rare Disease🦓 warrior!♓
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149 Followers 329 Following A nonprofit organization dedicated to raising awareness for #Endosalpingiosis
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Harsha K Rajasimha @Harsharajasimha
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93 Followers 701 Following Sono #EricaAstrea e il mio impegno è quello di divulgare la conoscenza di questa rara malattia, e dare supporto a chi ne è affetto! Unitevi a me! 🧜🏼♀️
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PSP Society of Canada @PSPSocietyCDA
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Dante Labs @DanteLabs
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Healx @healx
3K Followers 607 Following AI-powered and patient-inspired. We accelerate the discovery and development of #raredisease treatments.
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Jeff D'Angelo @JeffDDAngelo
76 Followers 86 Following
Heidi Grabenstatter @PatientIntv
2K Followers 2K Following RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
Rey Goicochea @Rey_Alteryx
199 Followers 1K Following Enterprise Analytics @Alteryx. Helping customers deploy self-service advanced analytics and solve business challenges. Tweets are my own.
IRDiRC @irdirc
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FMDSA @FMDartery
2K Followers 2K Following The recognized leader in the support of Fibromuscular Dysplasia (FMD) awareness, education and research. non-profit (501)(c3)#RUN4FMDSA
Dermetel @dermetel
132 Followers 444 Following #Nonprofit specializing in rare diseases. #Phase1 clinical trials for #TMAU supplement; #free #teledermatology & #youthcamps
Kareem Abdul-Jabbar @kaj33
2.1M Followers 418 Following Official X of NBA Legend, 6x Champion, 6x MVP, 8x Columnist of the Year and award winning newsletter https://t.co/E027yVfmkt.
DFPCUK @DF_PC
221 Followers 591 Following Desmoid Fibromatosis Patients & Carers is here to empower & support patients to live beyond their diagnosis.
Patient Chat @patientchat
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Patient Empowerment N... @power4patients
4K Followers 2K Following Empowers patients & care partners at every step of their cancer journey. Empowered #patientchat host. Get personalized support! Text ‘EMPOWER’ to 833-213- 665Trends for United States
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