USC Schaeffer @schaeffer.usc.edu Home to the Schaeffer Center for Health Policy & Economics and the Schaeffer Fellows in Government Service. Transforming policy through rigorous, independent research and close engagement with public and private sector leaders.
American Epilepsy Society @amepilepsysoc.bsky.social Official account for American Epilepsy Society. We support research + education for professionals working towards a world without epilepsy. RPs ≠ endorsements.
LifeArc @lifearc.bsky.social Self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.
Learn more at lifearc.org
RADeep Network @radeep.bsky.social RADeep (Rare Anaemia Disorders European Epidemiological Platform) is a GDPR-compliant patient registry launched in 2017.
Medlive - A PlatformQ Health Brand @medliveofficial.bsky.social Education for healthcare providers, patients & caregivers. 🩺💜👩🏻⚕️👨🏽⚕️
Make informed health decisions based on the latest science.
Access Medlive here ➡️ https://bit.ly/3QAXfVt
The MED13L Foundation @med13lfoundation.bsky.social Where data fuels discovery and every variant finds a voice — Every Story Matters.
RASopathies Network @rasnet.bsky.social Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh
Rare Disease Clinical Trial Network @rarediseasectn.bsky.social HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.- E Emory Department of Human Genetics @emorygenetics.bsky.social We are geneticists and genetic counselors at Emory University School of Medicine. Interested in #neuroscience, epigenetics, metabolic disorders, brain organoids, computational/quantitative genetics. This account will share research and events.
Team Telomere @teamtelomere.bsky.social Nonprofit organization
International advocacy for those treating, researching, and affected by Telomere Biology Disorder. #TeamTelomere #DyskeratosisCongenita
Syngap Research Fund @curesyngap1.bsky.social SRF, est 2018, exists to improve the quality of life of SynGAP patients through the research and development.
National Urea Cycle Disorders Foundation @nucdf.bsky.social We support patients and families affected by urea cycle disorders, a group of rare genetic diseases. Working to advance research, improve care, and raise awareness that saves lives https://nucdf.org
#UCDs #RareDisease #CheckAmmonia
National Ataxia Foundation @ataxiafoundation.bsky.social Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
MSU @myositissupport.bsky.social We are a patient centered, from the Heart nonprofit for those affected by #Myositis, the Idiopathic Inflammatory Myopathies. Support starts here! Also, research, patient financial assistance, and more! UnderstandingMyositis.org
Muscular Dystrophy Association @mda.org MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Mission MSA @missionmsa.bsky.social Mission MSA serves the MSA community by offering support, education, research funding, advocacy and awareness.
To learn more, visit: missionmsa.org
Lipodystrophy United @lipodystrophyunite.bsky.social The ONLY lipodystrophy patient foundation in the United States. We strive to increase understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Follow this account and visit our website to learn more!
Les Turner ALS Foundation @lesturnerals.bsky.social The leader in comprehensive #ALS care in Chicagoland
International Myeloma Foundation @imfmyeloma.bsky.social Let’s face multiple myeloma together. We’re here with support, resources, and community. #myeloma #mmsm
myeloma.org
Huntington's Disease Society of America @hdsanational.bsky.social HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. In the battle against Huntington’s disease no one fights alone. AT HDSA, FAMILY IS EVERYTHING!
Family Heart Foundation @familyheartfdn.bsky.social The Family Heart Foundation is a patient-driven nonprofit focused on advocacy, research and education of FH and elevated Lipoprotein(a). Learn more: www.FamilyHeart.org
#KnowFH #KnowLpa
Cure GM1 Foundation @curegm1.bsky.social The only 501(c)(3) nonprofit entirely dedicated to GM1 gangliosidosis, a fatal neurological disease that primarily impacts babies and children.
Autoinflammatory Alliance @autoinflammatory.bsky.social The Autoinflammatory Alliance is a 501c3 nonprofit org helping to improve awareness, care and treatment for rare autoinflammatory and immunedysregulatory diseases. We are here to help patients, caregivers, and support research.
Amyloidosis Research Consortium @amyloidosis.bsky.social ARC is accelerating the development of and access to new and innovative treatments for systemic #amyloidosis
KFF @kff.org The independent source for health policy research, polling, and news.
KFF Health News @kffhealthnews.org A national newsroom that produces in-depth journalism about health issues; a core program of @KFF.org.
American Brain Foundation @abfbrain.bsky.social We bring researchers and donors together to cure brain disease. #CureOneCureMany
🔬 Fund research. Cure brain disease ➡️ https://buff.ly/xFAbFbT 💓
🧠 Learn more about brain disease ➡️ hootbio.com/abf
Activity Uplift @activityuplift.bsky.social Fun activities for Dementia & Alzheimer's Caregivers, Seniors, and Activity Professionals. https://activityuplift.com
Kabuki Syndrome Foundation @kabukisyndrome.bsky.social We drive research to treatments for this rare disease through collaboration, education, and fundraising. www.kabukisyndromefoundation.org
American Society of Human Genetics (ASHG) @geneticssociety.bsky.social 🧬Founded in 1948, the American Society of Human Genetics (ASHG) is the primary professional membership organization for #humangenetics specialists worldwide.
www.ashg.org
Association for Creatine Deficiencies @creatineinfo.bsky.social On a mission to CURE CREATINE DEFICIENCIES
creatineinfo.org
PA Rare Disease Advisory Council @pardac.bsky.social 
International Pemphigus & Pemphigoid Foundation @healourskin.bsky.social The mission of the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid through support, education, awareness, advocacy, and research. Connect with us at www.pemphigus.org
SMA Europe @sma-europe.bsky.social SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
Visit our website: https://www.sma-europe.eu/
@wilhelmfoundation.bsky.social @wilhelmfoundation.bsky.social Swedish-based international organisation leading the charge in fostering collaborations among researchers, PLWUDs and healthcare providers to find answers for individuals and families affect by undiagnosed diseases.
Narcolepsy Network @narcolepsynetwork.bsky.social The official Bluesky feed for Narcolepsy Network®, a non-profit organization dedicated to advocating for people with narcolepsy and IH & their families, increasing public awareness, and promoting research.
Rare Disease Research UK @rdrukhub.bsky.social We hope to be able to significantly impact the RD research landscape and improve the lives of those directly or indirectly affected by rare diseases.
Patient Advocate Foundation @patient-advocates.bsky.social Patient Advocate Foundation and the PAN Foundation have merged to create the nation's most comprehensive nonprofit dedicated to helping people navigate, access, and afford healthcare. Learn more at
uniting.patientadvocate.org
Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social Supporting children and young adults with Congenital Hyperinsulinism.
Family Support Group
Patient Led Research
Advocacy
Family Days and Conferences
https://linktr.ee/chcharityuk
Sen. Maria Cantwell @cantwell.senate.gov U.S. Senator from Washington State | Ranking Member @commerce.senate.gov | RS≠endorsement
Rep. Jared Huffman @rephuffman.bsky.social Congressman for California's North Coast. Ranking Member of @naturalresources.bsky.social
Follow me on Instagram https://www.instagram.com/rephuffman/
Barack Obama @barackobama.bsky.social Dad, husband, President, citizen. barackobamabooks.com
Rep. Ro Khanna @khanna.house.gov Silicon Valley's CA-17. New economic patriotism & restoring American manufacturing. Pro working families. Ending endless wars. No PAC $. He/Him.
American Association for Cancer Research (AACR) @theaacr.bsky.social The mission of the American Association for Cancer Research (AACR) is to prevent and cure cancer through research, education, communication, collaboration, science policy and advocacy, and funding for cancer research.
APHA @apha.org The American Public Health Association works for optimal and equitable health & well-being for all. Join us at APHA.org
Rep. Joe Neguse @neguse.house.gov Fighting for the people, lands, water, and farms of Northern & Western Colorado ⛰️. Husband. Dad of two awesome kids. Attorney. Proud Coloradan.
Rep. Debbie Dingell @debbiedingell.house.gov Proudly serving the people of Michigan's 6th Congressional District. Chair of the House Democratic Policy and Communications Committee.
Senator Ruben Gallego @gallego.senate.gov U.S. Senator for Arizona.
Husband. Dad. Veteran.
Rep. Chris Pappas @repchrispappas.bsky.social Member of Congress serving New Hampshire's 1st District | Life-long Manchester Resident, former Executive Councilor for District 4 | #NH01
pappas.house.gov
The Hill @thehill.com The Hill is the premier source for policy and political news. Follow our news at thehill.com
DC Health @dchealth.bsky.social DC Health, the District of Columbia's Department of Health, promotes health, wellness and equality across DC and protects the safety of residents, visitors and those doing business here. | https://linktr.ee/dchealth
CURE Epilepsy @cureepilepsy.bsky.social CURE Epilepsy is the leading nongovernmental funder of epilepsy research, with over 300 grants funded in 19 countries to date.
Angelman Syndrome Foundation @angelmanfoundation.bsky.social The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We e
Congresswoman Yvette D. Clarke @repyvetteclarke.bsky.social Official account, U.S. Rep. Yvette D. Clarke (NY-09, Brooklyn). Chair of the Congressional Black Caucus. Serving on the Energy and Commerce Committee. Brooklyn bred.
CheckRare @checkrare.bsky.social Rare diseases are our focus, expertise, and passion.
National Organization for Rare Disorders (NORD) @nordrare.bsky.social NORD is a patient advocacy organization leading the fight to improve the lives of rare disease patients. Alone we are rare. Together we are strong.®
www.rarediseases.org
Endpoints News @endpts.com We're where the business of medicine gets answers. An independent news media organization covering biotech, pharma, science, policy, finance, venture capital and markets, and how they drive the life sciences industry. Read us at www.endpts.com. 
Rachel Cohrs Zhang @rachelcohrs.bsky.social 
The New York Times @nytimes.com We seek the truth and help people understand the world. Not a subscriber? Your first month is now free in our app. https://nytimes.onelink.me/Xpht/zbx4nci9
Benjamin Ryan @benryanwriter.bsky.social Independent investigative reporter.
http://www.benryan.net
Subscribe: https://benryan.substack.com
NPR @npr.org This is NPR 🎙️
Senator Amy Klobuchar @klobuchar.senate.gov Senior U.S. Senator from MN | Snow enthusiast ❄️
Energy & Commerce Democrats @energycommerce.bsky.social Fighting to protect health care, lower costs, defend consumers, and lead the clean energy transition under Ranking Member @repfrankpallone.bsky.social
Bluesky @bsky.app official Bluesky account (check username👆)
Bugs, feature requests, feedback: support@bsky.app