@raregivers
@raregivers
Raregivers sources research, relief and inspiration for families living with rare diseases.
ID: 1061740000151138304
https://linktr.ee/AngelAid 11-11-2018 21:58:36
949 Tweet
248 Followers
84 Following
Brigham and Women’s Research
@brighamresearch
We’ve moved! Check out @MGBResearchNews for the latest updates from across our research community.
Charlene Son Rigby
@charleneson
Data Geek. Rare Disease Advocate. Marketer. Mom. Not necessarily in that order. Committed to curing #STXBP1 At @RARE_X_ and @curestxbp1. Opinions are my own.
MedicAlert
@medicalert
MedicAlert 501(c)(3) nonprofit. Original creator of the medical ID, the only one backed by 24/7 emergency response services. Since 1956, 4 million lives saved.
Rich Elles
@richardelles
🌁 Amateur Californian 🏆 2x Ironman 🧬 Patient Advocate 🌲 Stanford Health Equity 🐾 Dog Dad
Janet Freeman-Daily
@jfreemandaily
Writer, speaker, science geek, cancer research advocate and activist. Living with ROS1+ lung cancer since 2011. Cofounder @ros1cancer, @IASLC STARS. #LCSM
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Laura Vinci O'Neill
@lauraevinci
Partner, New York Health Media Lead @finnpartners. Journalism & MBA grad. You live but once; you might as well be amusing. 👟@nycmarathon finisher ‘22 #dogmom
SoniyaFit
@soniyafit
▫️Ultra-Rare Disease Warrior 🧬 Familial Chylomicronaemia Syndrome (affects 1 in 1 million) | Mental Health Advocate▫️Book - COMING SOON ▫️Wife & Mum of 2
CHP Transplant
@chptransplant
George Mazariegos MD, Chief of Pediatric Transplantation, UPMC Children’s Hospital of Pittsburgh and Chair, @StarzlT #livertwitter
RareShare
@rareshareorg
RareShare is a social platform building communities for patients, families, and healthcare professionals affected by rare medical disorders.
Sarita Edwards
@saritaedwards
Rare Mom (#Trisomy 18) | Doctoral candidate | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth
RareConnect
@rareconnect
🌐Connecting #raredisease patients globally at rareconnect.org. 💻Website help at @RareConnectSup.
Beyond the Diagnosis
@beyondthedx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Becky Sansbury
@aftrtheshock
Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
medicalmomma
@prk2
Speaker, Rare disease pt/caregiver, CMMRD/mismatch repair EPCAM Gene family. Medically complex family who travel for medical care
CdnAssocOfPompe
@pompecanada
A Canadian patient group for families affected by #Pompe Disease. Occurring in 1/40k births, it's very rare. Comments by @bcrittenden
HypoPARA Association
@hypoparaassoc
Independent non-profit devoted to helping those with ALL forms of hypoparathyroidism.
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Komodo Health
@komodohealth
At Komodo, we’re helping our customers reach a higher evidentiary standard so that together, we can reduce the burden of disease.
Relapsing Polychondritis Foundation
@rp_organization
The RP Foundation’s purpose is to facilitate awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP).
SynGAP Research Fund (SRF)
@curesyngap1
#SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 syngap.fund/F78A1 syngap.fund/10 🎙
The E.WE Foundation
@everyoneiswe
Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
TheRareFair
@therarefair
Powered by @tda4rare, The Rare Fair is the original virtual event designed for all members of the rare disease community. therarefair.com
PA Rare Disease Advisory Council
@pararedisease
To improve the quality of life for all those affected by rare diseases in Pennsylvania.
Andra Stratton
@livinlavidalopo
Co-Founder of Lipodystrophy United Program Associate for #RareAsOne @CZIScience. Always hungry. Sometimes funny. Opinions are my own.
Eosinophilic Family Coalition
@eosinophilicc
Our Mission: To support and enhance the lives of families living with eosinophilic disorders while advocating for those families and educating those around us.
Nucleati
@nucleati
Pioneering fully automated medical-grade evidence collection and curation to empower precision medicine.
CDG CARE
@cdgcareorg
CDG CARE is a nonprofit organization founded by parents to support families affected by Congenital Disorders of Glycosylation.
Jill Hawkins
@fam177a1mamma
Founder and President, FAM177A1 Research Fund
DTRA
@dtraorg
Decentralized Trials and Research Alliance
CACNA1A Foundation
@cacna1a
Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
PHEFREE Consortium
@phefree_info
The mission of the PHEFREE Consortium is to improve the lives of those with #PKU through clinical research efforts across the US #phefreetogether2020
Adam Johnson - DadVocate
@rarediseasedad
Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
David Ross
@mensraredisease
MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Urea Cycle Disorders Consortium
@ucdconsortium
The UCDC is dedicated to improving the lives of individuals affected by urea cycle disorders. An international collaboration, part of NIH RDCRN @rarediseasesnet
Sisters' Hope Foundation
@sistershopealsp
The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP.
Rare Disease Innovations Institute
@rdii_org
RDII is a non-profit organization focused on education, engagement and to equip the rare disease community
Indian Prader-Willi Syndrome Association
@ipwsa_
Indian Prader-Willi Syndrome Association(IPWSA) is a non-profit trust founded & run by parents of PWS angels. Connect with us at [email protected]
Elena Lister MD
@elenalistermd1
Adult/child psychiatrist,Grief specialist,Mom,tweets my own,Author-Giving Hope:Conversations with Children about Illness, Death and Loss-all stories anonymized
Abby Turnwald (she/her)
@pedsgcabby
Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
SymptomSurvey
@symptomsurvey
The #SymptomSurvey aims to educate doctors & nurses about what really matters to us when we experience #COVID or #flu -like symptoms. Created by @_VaccineSafety
The Scn2a Foundation
@scn2agene
Our mission is to drive & accelerate targeted therapies for SCN2A. Please consider donating to our cause: scn2afoundation.org/donate
Conquer Myasthenia Gravis
@conquermg
Myasthenia Gravis is a neurological disorder. Conquer MG is a nonprofit, driven by the desire to help MG patients get prompt diagnosis and optimal care. 💙
Flybrow
@flybrow
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Danny's Dose
@dannys_dose
Campaign to change Emergency Treatment Protocols in every state for over 32 million Americans requiring specialized care. (501C3)
Marni Cartelli
@purrfectly_rare
Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
Jordan’s Syndrome
@jordansgangels
Twitter to share info & drive funding to enable additional research on PPP2R5D/Jordan’s Syndrome, PPP2R1A, & PPP2R5C. Families can connect @Facebook!
Remember The Girls
@remember_girls
Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
ADR Canada🍁
@adr_canada
Educating about the need to prevent one of Canada's leading causes of death - adverse drug reactions, via #pharmacogenomics & data collection🧬
Odylia Therapeutics
@odyliatx
Nonprofit biotech accelerating drug development for #rarediseases.
DreamsiCkle Kids Fdn
@dreamsicklekids
501(c)(3)#SickleCellAdvocates #MakeSickleCellPopular #Nevada #SickleCellFoundation #RareDiseaseAwareness
Dallas Reed, MD
@dallasreedmd
Division Chief of Genetics, OB/GYN & Director of Perinatal Genetics, Tufts Medical Center; Asst Professor, Tufts Univ School of Medicine; new mom!