Mila's Miracle
@stopbatten
Mila fought hard against Batten disease, a rare fatal condition with no cure. Her story is now giving new hope to millions with genetic disease.
ID: 826651246232739841
https://www.stopbatten.org/ 01-02-2017 04:39:50
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nature
@nature
Research, News, and Commentary from Nature, the international science journal For daily science news, get Nature Briefing: go.nature.com/naturebriefing
Univ. of Maryland
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2 Nobel laureates, 6 Pulitzer recipients, scores of Fulbright scholars, one cute turtle and a bike ride away from our nation's capital! RTs ≠ endorsements.
Medscape
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David R. Liu
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Professor at Harvard, Broad Institute, & HHMI. Our lab integrates chemistry & evolution to illuminate biology & enable new therapeutics. IG/Threads: @davidrliu1
John Keilty
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Biotech veteran, start-up addict, science & data junkie.
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Health Editor, The Economist
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fightingformaya
@fightingformaya
Rare Disease Hunter. Fighting for Maya and others with TPP1 Deficiency
University of Maryland School of Medicine
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Founded in 1807, we are the 1st public med school in the US & a leader in medical education, research & healthcare.
Department of Health and Social Care
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We support ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.
Matthew Herper
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Writing and events at STAT. This is biology's century; Every data point has a face. ‘21 Polk Award. Signal: MattHerper.92
University of Oxford
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Welcome to our official account 👋 Follow for the latest news, research and updates about life at Oxford.
Nicola Blackwood
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Chair @GenomicsEngland, Chair @OxUInnovation, Board Member @BioNTech_Group, Former Innovation Minister, old time musician.
BDSRA Foundation
@bdsra
Batten Disease Support, Research, & Advocacy. Together, we are #BattenAdvocatesForACure. Donate here: ow.ly/PHs450Qkbl5
Charles Peek
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Field Weather Reporter for @weatherchannel. Lover of nature and capturing it with a camera while traveling all over the US. It’s the journey!
Daniel S. Levine
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Principal, Levine Media Group, host of The Bio Report and RARECast podcasts, award-winning journalist focused on the life sciences.
ABPI
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Bina Venkataraman
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EveryLife Foundation
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Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
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David Leonhardt
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Senior writer, N.Y. Times. Author, "Ours Was the Shining Future: The Story of the American Dream." Best book of the year, Atlantic, FT & TNR. Now in paperback.
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@eperlste
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🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
Caroline Seydel
@carolineseydel
Science writer covering genetics, cancer, biotech. "Truth is a matter of the imagination. The soundest fact may fail or prevail in the style of its telling."
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.
Mediaplanet UKIE
@mediaplanetuk
Mediaplanet specialises in the local production of unique and engaging campaigns, created in collaboration with renowned influencers and associations.
Andrew W. Lo
@andrewwlo
Charles E. and Susan T. Harris Professor, MIT Sloan School of Management
Jon Watts
@jwattsgroup
Oligonucleotide Therapeutics and Chemical Biology. Find us also at @jwattsgroup.bsky.social
Genomics England
@genomicsengland
We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
Oligonucleotide Therapeutics Society
@otsociety
A nonprofit forum to foster academia and industry based research and development of oligonucleotide therapeutics.
Perlara
@perlarapbc
perlara.com The first biotech public benefit corporation est. 2014. Direct-to-patient and decentralized. Co-owner @epalrestat
Inside Precision Medicine
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Exclusive news, features, and analysis on the research, tools, regulations, and applications driving precision medicine. From the publisher of @GENBio
International SCN8A Alliance
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The International SCN8A Alliance is working collaboratively with families, clinicians and researchers to advance the understanding of and treatments for SCN8A.
Endpoints News
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The biopharma world is here. Get the industry’s most comprehensive daily news reports at endpts.com/subscribe
Brian Wallach
@bsw5020
Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
n-Lorem Foundation
@n_lorem
Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
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 🎙
AnnemiekeAartsma-Rus
@oligogirl
Translating science from bench to bedside and from jargon to lay language
Fyodor Urnov
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Gene editor + Professor Molecular Therapeutics @berkeleyMCB + Director for Technology and Translation @igisci + @danahercorp Beacon for CRISPR Cures.
Cookies4Cures
@cookies4cures
Funding research into rare childhood diseases, one cookie at a time.
Sophie’s Neighborhood
@sophiesneighbor
Boulder, CO-based nonprofit founded in response to Sophie’s diagnosis of a rare, degenerative genetic disorder: MCTO. 🗣Research/Treatment/Cure
santoboulder
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Modern twist on New Mexico soul food by award-winning Chef Hosea Rosenberg. Located in Boulder, CO. Quick-service breakfast daily, Full-service dinner 4p daily.
Brandon Copic
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Sinner, Saved By Grace - Veteran Storm Chaser - Trying to leave a positive mark in this world! Join The Chase LIVE: ChaserWx.Net
Brad Arnold
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Storm chaser—@ryanhallyall, @RadarOmega, and @LiveStormsMedia. Documenting extreme weather is my passion. University of Alabama-Huntsville graduate.
Raiden Science Foundation
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Give kids suffering from UBA5 disease a chance to live a healthy life.
Sammy Basso
@sammybasso
Lotto per la ricerca sulla Progeria e lotto per un mondo migliore
ForHenryAHC
@forhenryahc
Henry has a rare, random, genetic neurological condition called AHC. We are in a race against time to raise $3 million for an ASO treatment for him.
EveryONE Medicines
@everyonemed
One Patient— One Medicine EveryONE Medicines delivers individualized precision therapeutics, customized to the unique pathogenic genetic mutation of patients.
Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Wheelers Warriors
@wheelerswarrior
Wheeler was diagnosed with CLN3/Juvenile Batten Disease at 4 weeks old. Join us as we #battlebatten and raise funds and awareness to #savewheeler
Screen4Care
@screen4care
Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
RARE-X
@rare_x_
PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
Richard Scott
@rich_genomics
CEO @GenomicsEngland, Honorary Consultant and Associate Professor in Clinical Genetics @GreatOrmondSt. Still just about a runner
Bill Clifton, MD
@docclift
ABNS Board Certified Neurosurgeon, Assistant Professor CWRU. Complex Spine Deformity, Spine Oncology, Scoliosis. Follower of Christ. Tweets are my own.
Tatton Brown Rahman Syndrome (TBRS) Community
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The Tatton Brown Rahman Syndrome Community supports research and educates individuals with TBRS and their families, friends, and service providers.
Holly Carmichael
@carmichaelholly
Wife, Mom, Boss, #DisabilityRights & #raredisease Advocate, former CEO @gtindependence, co-founder @epalrestat, here to change the world.