Biowatch @Biowatch1

Joined September 2022

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CheckRare @CheckRare

3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.

Solid’s mandate is to improve the lives of patients living with devastating neuromuscular and cardiac diseases. #TogetherWeAreSolid

Solid Biosciences @Solid_Bio

2K Followers 206 Following Solid’s mandate is to improve the lives of patients living with devastating neuromuscular and cardiac diseases. #TogetherWeAreSolid

Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy

FSIG @FabryOrg

384 Followers 68 Following Increasing awareness for those with Fabry disease to create a brighter future, and better lives today - Education, Support, Awareness and Advocacy

REGENXBIO is dedicated to transforming the lives of people suffering from severe diseases with significant unmet medical need through our NAV® gene therapy.

REGENXBIO @REGENXBIO

2K Followers 178 Following REGENXBIO is dedicated to transforming the lives of people suffering from severe diseases with significant unmet medical need through our NAV® gene therapy.

Official global newsroom account for Biogen, a leading biotech company pioneering innovative science since 1978. Community guidelines: https://t.co/56frPQHf74

Biogen @biogen

45K Followers 240 Following Official global newsroom account for Biogen, a leading biotech company pioneering innovative science since 1978. Community guidelines: https://t.co/56frPQHf74

Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe

Sarepta Therapeutics @Sarepta

7K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe

uniQure is delivering on the promise of gene therapy - single treatments with potentially curative result for patients with severe genetic diseases.

uniQure @uniQure_NV

4K Followers 129 Following uniQure is delivering on the promise of gene therapy - single treatments with potentially curative result for patients with severe genetic diseases.

Orchard Therapeutics ... @orchard_tx

2K Followers 403 Following Dedicated to transforming the lives of patients with inherited diseases through innovative gene therapy.

PTC is a patient-centered biopharmaceutical company focused on discovering, developing & commercializing medicine for patients with rare disease

PTC Therapeutics @PTCBio

2K Followers 293 Following PTC is a patient-centered biopharmaceutical company focused on discovering, developing & commercializing medicine for patients with rare disease

Adaptimmune is a fully integrated cell therapy company focused on developing engineered cell therapies with the potential to redefine treatment of solid tumors.

Adaptimmune @Adaptimmune

4K Followers 295 Following Adaptimmune is a fully integrated cell therapy company focused on developing engineered cell therapies with the potential to redefine treatment of solid tumors.

We are a clinical-stage lentiviral gene therapy company, powered by our plato® gene therapy platform. Our vision: bring personalized gene therapy to the world.

AVROBIO @avrobio

2K Followers 291 Following We are a clinical-stage lentiviral gene therapy company, powered by our plato® gene therapy platform. Our vision: bring personalized gene therapy to the world.

FIN is an independent & vibrant network of Fabry patient associations whose purpose is to collaborate, communicate, promote best practices & empower patients

Fabry International N... @fabryintnetwork

428 Followers 107 Following FIN is an independent & vibrant network of Fabry patient associations whose purpose is to collaborate, communicate, promote best practices & empower patients

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

Beacon for Rare Disea... @RareBeacon

12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

Sangamo Therapeutics @SangamoTx

4K Followers 180 Following Committed to translating our ground-breaking science into genomic medicines that transform patients’ lives.

At Editas Medicine, we are harnessing the potential of CRISPR gene editing to develop medicines for people living with serious diseases

Editas Medicine @editasmed

8K Followers 126 Following At Editas Medicine, we are harnessing the potential of CRISPR gene editing to develop medicines for people living with serious diseases

CRISPR Therapeutics @CRISPRTX

24K Followers 0 Following

LogicBio Tx @logicbio

539 Followers 94 Following For future updates on our genome editing program, follow @AlexionPharmaUS.

The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm

Orphanet @Orphanet

6K Followers 590 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm

Broad Institute @broadinstitute

100K Followers 3K Following A multidisciplinary community of researchers on a mission to improve human health.

UPenn Million Dollar ... @MDBRide4Rare

974 Followers 389 Following Riding for rare disease research since 2014! Check us out! https://t.co/KmHVtNwzXA

Cambridge Rare Diseas... @camraredisease

8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj

World Orphan Drug Con... @OrphanConf

5K Followers 858 Following Get regular updates on #WorldOrphanUSA! June 9-11, 2026 | Boston Convention & Exhibition Center

Nat Fabry Diseas Fdn @FabryDisease1

747 Followers 47 Following Our primary goal is to provide education and support to enable people with Fabry disease to live better and longer lives. @jerrywalter

Rare Diseases @CheckOrphan

18K Followers 5K Following CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs

A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!

RDLA @RareAdvocates

6K Followers 2K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!

@RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own

Rare Disease Policy @RareDiseasesEU

3K Followers 891 Following @RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own

Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi

Rare Disease Report @RareDR

15K Followers 1K Following Breaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi

National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them.

#RareDisease.

Rare Disease UK @rarediseaseuk

20K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.

RareConnect @RareConnect

18K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.

NIH-funded network fostering collaborative research among 21 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.

Rare Diseases Clinica... @rarediseasesnet

9K Followers 490 Following NIH-funded network fostering collaborative research among 21 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.

28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay

Rare Disease Day @rarediseaseday

42K Followers 3K Following 28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay

An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.

EURORDIS-Rare Disease... @eurordis

31K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.

CheckRare @CheckRare

3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.

(PPALS) is a non-profit organization committed to supporting the function of Patient Advocacy within the biotech and pharmaceutical industries.

PPALS @PPALSorg

991 Followers 2K Following (PPALS) is a non-profit organization committed to supporting the function of Patient Advocacy within the biotech and pharmaceutical industries.

Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.

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.

We're a #GeneEditing company, developing novel, potentially curative therapeutics leveraging #CRISPR-based technologies. Guidelines: https://t.co/u2gHl9Tmgr

Intellia Therapeutics @intelliatx

12K Followers 205 Following We're a #GeneEditing company, developing novel, potentially curative therapeutics leveraging #CRISPR-based technologies. Guidelines: https://t.co/u2gHl9Tmgr

The CDKL5 Registry helps the CDKL5 Deficiency Disorder community learn more about CDD and collects data to support CDD research and pharmaceutical development

CDKL5 Registry @CDKL5Registry

48 Followers 35 Following The CDKL5 Registry helps the CDKL5 Deficiency Disorder community learn more about CDD and collects data to support CDD research and pharmaceutical development

CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

CORD @raredisorders

5K Followers 687 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

World Orphan Drug Con... @orphan_drugs

634 Followers 405 Following The World Orphan Drug Congress is an award-winning orphan drugs & rare diseases event.

We're healthcare communications experts. We help you understand, engage & earn trust. Want to tell your story, show your value & inspire action? We'll deliver.

SmithSolve @SmithSolve

403 Followers 859 Following We're healthcare communications experts. We help you understand, engage & earn trust. Want to tell your story, show your value & inspire action? We'll deliver.

Alexion @AlexionPharma

12K Followers 319 Following Alexion, AstraZeneca Rare Disease is focused on pioneering new possibilities for the rare disease community.

Global Genes @GlobalGenes

29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare

#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

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

Dan Budwick @DanBudwick

3K Followers 1K Following Founder/CEO, @1ABMedia. Brand builder & C-suite advisor for biotechs and VCs. Secretary/Director, LJ Piniella Foundation. Jersey guy/NY sports fan living in FL

Kite, a Gilead Compan... @KitePharma

5K Followers 223 Following At Kite, a Gilead Company, our singular focus is achieving cures with cell therapy. Guidelines: https://t.co/tweIpVR2Rr

Commercial-stage biopharmaceutical company focused on delivering innovative medicines for patients with rare diseases. Read more: https://t.co/fJhKFKg7Ix

Agios @AgiosPharma

3K Followers 259 Following Commercial-stage biopharmaceutical company focused on delivering innovative medicines for patients with rare diseases. Read more: https://t.co/fJhKFKg7Ix

ARM champions the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems, and society.

Alliance for Regenera... @alliancerm

8K Followers 2K Following ARM champions the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems, and society.

Advancing knowledge, awareness, and education leading to the discovery and clinical application of genetic and cellular therapies to alleviate human disease.

ASGCT @ASGCTherapy

10K Followers 2K Following Advancing knowledge, awareness, and education leading to the discovery and clinical application of genetic and cellular therapies to alleviate human disease.

We’re transforming lives through curative #genetictherapies - building a future of lasting hope for patients and families. https://t.co/1dUPTEWcyx

Genetix Biotherapeuti... @genetix_biotx

10K Followers 718 Following We’re transforming lives through curative #genetictherapies - building a future of lasting hope for patients and families. https://t.co/1dUPTEWcyx

Dr. Yvonne Greenstree... @ygreenst

837 Followers 179 Following CEO at @Alnylam Pharmaceuticals which is leading the RNAi revolution. Views are my own.

Leader in #RNAiTherapeutics, having pioneered this innovative approach to silencing the genes that cause disease. Community guidelines: https://t.co/AgfAVlnqvA.

Alnylam Pharmaceutica... @Alnylam

17K Followers 619 Following Leader in #RNAiTherapeutics, having pioneered this innovative approach to silencing the genes that cause disease. Community guidelines: https://t.co/AgfAVlnqvA.