We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Washington, DC
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Oh! The Places You’ll Go! • travel writer • cancer patient/advocate @sloankettering • #silencebreaker • #mBClifer #giveyourkidstheworld • #worldschooling
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I am here for any prader-willi support. If you have any questions inbox me or tweet me. I have been around prader-willi all my life so i am here to help you.
We support individuals who are living with KAT6A and KAT6B syndromes around the world. 🧬 We advance research aimed at developing treatments.
Neuroscientist who found the drug that gave her daughter years. Now writing the book nobody gave her.
CEO
@lgsfoundation
un•just / not based on or behaving according to what is morally right ~
turning the lights on, uncovering the dark and immoral in the crypto space🧙🧟🧛🏼♀️❌🦸
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.”
Nonprofit professional and patient advocate, mother of two, a foodie, and constantly running late trying to fit in just one more thing
beacons.ai/teachrare
Teaching and learning for rare diseases, undiagnosed diseases, and special education.
Founder @txrare Dedicated to Improving Access for the Rare Disease Community. Hunter’s (SMA Type 1) Zebra Mom 🦓. Patient Advocate. Speaker. Author. 👦 🧬🦓
The TSC Alliance is a source of hope and support for people with tuberous sclerosis complex so they can live their fullest lives. #HopeNoMatterHowComplex
Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Rare Disease Patient Advocate. Lets spread awareness for the OVER 7,000 RARE DISEASES and those they impact. Together we are strong. Lets change the world!!
#SynGAP1 Papa, Husband, ID and drug dev doc, Science fanboy, #RareDisease Advocate alongside @cureSYNGAP1, Music fan... here to help so just ask *views=my own*
Clinical lab geneticist in training @UMCUtrecht. Chair @EMN_MetSoc @FemalesInMS. Alumni @vib_ccb @KU_Leuven @DKFZ @MayoClinic Stem-cell & metabolism fangirl🧠🫀
Congresswoman for Ohio’s 13th Congressional District, the Birthplace of Champions. Posts are made by staff unless denoted w/ ESS
Official Twitter account of the Advanced Research Projects Agency for Health (ARPA-H).
Privacy Policy: hhs.gov/privacy.html
Engagement ≠ endorsement
Wife, Mom, Boss, #DisabilityRights & #raredisease Advocate, former CEO @gtindependence, co-founder @epalrestat, here to change the world.
Clinical-stage biotech company developing epalrestat as the first targeted therapy for PMM2-CDG and other Congenital Disorders of Glycosylation
Senior Advisor, National Organization for Rare Disorders. Honored to work with amazing #raredisease patients, caregivers, researchers & clinicians.
Advocacy & Research Coordinator, International Pemphigus and Pemphigoid Foundation, #RareDisease Patient, Passionate Advocate and Father. #pemphigus, #pemhigoid
A national, nonprofit, volunteer organization providing information, support and networking opportunities to those impacted by galactosemia since 1985
Congresswoman proudly representing Massachusetts' Third District. @HouseDPCC Co-Chair. @EnergyCommerce member.
Co-Founder of Lipodystrophy United Program Associate for #RareAsOne @CZIScience. Always hungry. Sometimes funny. Opinions are my own.
MRDMH supports men’s mental health for those suffering with a rare disease.
#raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Rare disease advocate determined to drive a cure for VCP disease. Opinions expressed in this forum are my own and do not represent any of my organizations.
Proudly representing the Grand Strand and Pee Dee. #SC07 | Member of @HouseGOP @HouseCommerce and @JudiciaryGOP 🇺🇸 🌙 🌴
California Congressman & Leader of @OversightDems. Former Long Beach Mayor. Truth & Justice, always. 🇺🇸🏳️🌈
U.S. Congressman from Michigan's 13th District. Fighting for Michigan. Fighting for #MI13. Official Congressional account: @repshrithanedar
