EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
ID: 95460562
http://everylifefoundation.org/ 08-12-2009 17:15:20
5,5K Tweet
7,7K Followers
2,2K Following
pharmalot
@pharmalot
The latest news and views about the pharmaceutical industry, with @EdSilverman of @Statnews, ex-WSJ.. tips: [email protected]
Mayo Clinic
@mayoclinic
An integrated clinical practice, education and research institution specializing in treating patients. Account maintained by @MayoClinic.
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Sydney Lupkin
@slupkin
Correspondent at @NPRScience. Past: @KFFHealthNews, @VICENews, @MedPageToday, @ABC // DM for Signal
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Mustang Times
@mustangtimes
StephanieEmmaPfeffer
@stephemmapfeff
Writer/editor for PEOPLE and other outlets, fit mom, obsessive planner, runner (sometimes away from my kids), New Yorker trying to make the most of Boston.
Matthew Perrone
@ap_fdawriter
AP Health Writer focusing on medicine, money and policy. Signal: MattLPerrone.82. Sends tips, docs anonymously: ap.org/contact-us/new…
Amy Klobuchar
@amyklobuchar
U.S. Senator from Minnesota.
Rep. Doris Matsui
@dorismatsui
Representing California's 7th Congressional District — including the capital city of Sacramento. Subcommittee Ranking Member on the @EnergyCommerce Committee.
Amy Gaviglio
@agavig
Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
BioMarin
@biomarin
At BioMarin, we are committed to transforming lives through genetic discovery. Our community guidelines: bit.ly/3YZNeET
Ken Alltucker
@kalltucker
Health reporter @usatoday, formerly @azcentral. Father of two girls, bassist, SF Bay Area native. Contact: [email protected], 703-854-5402
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.
SWHR
@swhr
The Society for Women's Health Research (SWHR) is dedicated to advancing women’s health through science, policy, and education. Follow/RT does not = endorsement
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
The Leukemia & Lymphoma Society - Policy Advocacy
@llsadvocacy
@LLSAdvocacy works to drive policies that accelerate the development of new cancer treatments & break down the barriers to care that patients often encounter.
Kate Sheridan
@sheridan_kate
Not active here. Freelance researcher, library student, former reporter at @statnews.
Sunny Brous
@sunnystrongals
I have ALS but it does not have me. No apologies, no excuses, no regrets, just me.
Natalie Metzger
@metzart
Producer. Writer. Director. Bookworm. Futurist. VP of Production & Development at Vanishing Angle
World Orphan Drug Congress
@orphan_drugs
World Orphan Drug Congress Europe | 27 - 29 October 2025 | RAI Congress Centre, Amsterdam
Mike Graglia 🌻
@jmgraglia
CEO @cureSYNGAP1 🧬 Pod SynGAP.Fund/10 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Sarita Edwards
@saritaedwards
Rare Mom (#Trisomy 18) | Doctoral candidate | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth
David Fajgenbaum, MD
@davidfajgenbaum
@Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure ChasingMyCure.com
Margot Sanger-Katz
@sangerkatz
Covering health care metaphors at @nytimes @upshotnyt. Popcorn enthusiast. #wthealth
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.
Damian Garde
@damiangarde
@business reporter covering pharma / [email protected] / Signal: damiangarde.67
Virginie McNamar
@virginiemcnamar
Rare Disease advocate, Syngap1 mom, @CureSYNGAP1, Founder of Betterflye
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Rachel Polansky
@rpolanskynews
Morning Anchor @NewsChannel9 | Murrow, Emmy, AP & Telly winning investigative journalist | Previous: @ATLNewsFirst @wkyc @nbc2 | ✉[email protected]
RDLA
@rareadvocates
A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Foundation Medicine
@foundationatcg
Changing the course of cancer with molecular information. #WeAreFMI Community Guidelines: bit.ly/3iSL4jW
ASGCT
@asgctherapy
Advancing knowledge, awareness, and education leading to the discovery and clinical application of genetic and cellular therapies to alleviate human disease.
HypoPARA Association
@hypoparaassoc
Independent non-profit devoted to helping those with ALL forms of hypoparathyroidism.
Tracy Dixon-Salazar
@tracydixonsalaz
Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Neena Nizar
@neenanizar
Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, thejansensfoundation.org Opinions are my own
J&J Innovative Medicine
@jnjinnovmed
We innovate with purpose to lead where medicine is going. Channel run by Janssen Global Services LLC, NJ, USA. Our community guidelines: bit.ly/46qABG9
FamilieSCN2A
@familiescn2a
Our vision is to find effective treatments and a cure for SCN2A disorders.
Frankie Paris
@fparises
data, visuals & words @upshotnyt. former @berkshireeagle, @npr, @wbur
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
OsiyoTV
@osiyo_tv
Osiyo, Voices of the Cherokee People is a regional Emmy award-winning docuseries featuring Cherokee people, places, history & culture.
ALS News today
@alsnewstoday
We are dedicated to sharing the latest news, research, and ALS patient perspectives.
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Acadia Pharmaceuticals
@acadiapharma
Acadia is trailblazing breakthroughs in science to elevate life. See our community guidelines: bit.ly/3uYjGXr
Luke Rosen
@lukebrosen
Dad of two remarkable kids. Founder of KIF1A.org & Rescue7.org. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Michael Felker
@dukehfdoc
Heart failure cardiologist, clinical researcher, Professor of Medicine at Duke University. Dad, husband, sports fan. Proud president of HFSA
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
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]
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 🎙
Heidi Grabenstatter
@patientintv
RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
The E.WE Foundation
@everyoneiswe
Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
RareRising
@rarerising_org
RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.
Gillian Sapia RN
@gillianhsapia
Rare Disease mom. Legislative Advocate and Activist. Opinions expressed are MY OWN and do not reflect the views of any organization, employer, or other entity.
KBG Syndrome
@kbgsyndrome
KBG Syndrome is an ultra rare syndrome identified by a mutation in the ANKRD11 gene. 1 in 19 Million baby! This account is maintained by the KBG Foundation.
Becca Reef, MS CGC
@beccareef
Board Certified GC & Scientific Coordinator for @APBDRF advocating for the rare community 🦓 @UofR, @Penn MSGC, & @BostonChildrens Alum 🧬 she/her
n-Lorem Foundation
@n_lorem
Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Rare Disease Advisor
@raredisease_adv
Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
tisentotx
@tisentotx
To those lacking effective treatment options: We hear you. And we are relentlessly driving toward much-needed solutions. #MELAS #MitochondrialDisease
National Urea Cycle Disorders Foundation (NUCDF)
@cureucd
Nonprofit supporting patients & families affected by urea cycle disorders. Working to advance research, improve care & raise awareness that saves lives #NUCDF
flok
@flokhealth
Redefining clinical care and research priorities in metabolic health through the power of patient data.
Myasthenia Gravis News
@myastheniagnews
We are dedicated to sharing the latest news, research, and muscular dystrophy patient perspectives.
Canadian Rare Disease Network (CRDN)
@canadianrdn
Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Institute for Gene Therapies
@gene_therapies
Gene therapy is transforming how we treat diseases. But today’s healthcare system can’t realize its potential. We’re changing that.
Beth Steckler (she/her)
@purplemamabear
Focused on improving healthcare for patients & caregivers & medical professionals. Patient advocate, patient engagement. Believes kindness CAN change the world.
The Center for Innovation and Value Research
@ivi_health
A non-profit research organization committed to advancing the science, practice, and use of health technology assessment in health care.
OrphanetJournal at BMC
@ojrarediseases
Orphanet Journal of Rare Diseases is fully open access & published by @BioMedCentral (part of @SpringerNature), on behalf of @INSERM.
Marshall Summar, M.D.
@genedocrare
I am now the CEO of Uncommon Cures, a rare disease clinical trials company.
Chief Chuck Hoskin, Jr.
@chuckhoskin_jr
Chief of the Cherokee Nation