Rare & Ready: A Genetic Condition Coalition
@rare_ready
Supported by BioMarin & Ultragenyx, the Coalition educates state policymakers on the impact of conditions. Social media guidelines bit.ly/3AzXLue
ID: 1486019357755031558
25-01-2022 16:53:34
525 Tweet
220 Followers
146 Following
Rare Diseases
@checkorphan
CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
Kristen Vanags
@kristenvanags
8675309
@linlin8
Dysautonomia Intl.
@dysautonomia
Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
AiArthritis
@ifaiarthritis
International Foundation for Autoimmune & Autoinflammatory Arthritis “We don’t represent the patient voice, we ARE the patient voice.”
ADAPs
@adapadvocacy
ADAP Advocacy works to promote & enhance the AIDS Drug Assistance Program (ADAP) and improve access to care for persons living with HIV/AIDS. #UequalsU
Carman Deda Lake
@momof3dlakes
DSMomof3 606 NATIVE GulfVet HM3, RMA Humanitarian Mission Focused cPTSD,MST,Trauma&multi-Cancer Survivor w/rare CACNA1A Gene Mut Parent,Pt&Advocate, Influencer
TIICANN
@tiicann
National nonprofit working to help those living with HIV/AIDS and/or Viral Hepatitis receive access to care and treatment.
IFOPA
@ifopa
Fund research to find a cure for FOP while supporting individuals and families through education, public awareness and advocacy.
Amyloidosis
@amyloidosisfdn
Supporting #amyloidosis patients and families while promoting research, education and awareness. 248.922.9610 #AmyloidosisAwareness amyloidosis.org
Ken To
@ken_to_hongkong
Caregiver & Advocate | Living at risk of Huntington’s Disease | Passionate about raising awareness and supporting families
Kara Hinkley
@bravegals
Mom | Veteran | Public Policy Expert | Patient Advocate *opinions are own* #thefutureisaccessible 🏀🌈🧗♀️⚖️⚽️🚵♀️
Alana Catherwood
@alanacatherwood
Physician Associate in Emergency Medicine PA-R BSc (hons) Health Physiology Sports Massage Therapist
Kayla Miller
@xkaylalyn
Seronegative NMOSD patient/advocate/warrior
Michael Kavanaugh
@bigskybrain
Neuroscience, University of Montana
Finding that elusive diagnosis expeditiously.
@rarediseasedxrx
RareMDx is a rare disease diagnostic tool. It includes 4,009 curated diseases and 7,444 signs/symptoms, each weighted by relevance to specific disorders.
Martha Harlam
@m_harlam
Having hereditary Ataxia - it has slowed my mobility but NOT my will to make an impact on the world ! Actually- anyone can be a part of the solution!
Pro Bono Omics
@probonoomics
A journey to assist with rare disease challenges offering nil cost advice using computational modeling targeting personalized medicine for those in need.
Kaf.Vod
@kafuionline
Public Health Advocate -Clinical Research Management - Natural medicine enthusiast - Neglected Tropical Diseases - Afrocentric
bilasan
@bilasan2020
ICOSEP
@icoseporg
Patient Advocate organizations unite to support children with endocrine growth problems. Please join us and prove good people can create change for children!
Dana Rowland 💛💙
@dana_rmsks
Musculoskeletal Ultrasound @UMichRadiology. 💛💙Wife and mom- Rare Disease Advocate -Living with Addisons disease🦋Pituitary tumor - Views are my own -No DM’s
Jacks Miracle Mission
@jacksmission
Fighting for Jack and every child with INAD. Join us and be the miracle these children need. Account run by Jack's father Tim Drury Contact: [email protected]
Jameson Leuschke
@jleuschke41403
Hailey Brown
@haileybrow89286
Priscilla
@oravec45224
Minovia Therapeutics
@minovia_tx
A clinical-stage international biotechnology research company focused on treatment innovation for mitochondrial disease.
Jules O'Connell
@jules_o87821
Peaubo
@peaubo1446463
Pirjuq
@pirjuq444572
Manar Shabeb
@doctor_m900
MLS 🔬/Kuwait University
Bette Marchese
@bettemarchese
MI Rare Coalition
@mirarecoalition
Dedicated to improving the quality of life for all Michigan residents affected by a rare condition through advocacy, education, and awareness.
Wireati
@wireati15201
Milan Medicals
@milanmedicals
Global Specialty Pharmacy 🌍Serving Health Needs Across Borders Rare Medicines Delivered worldwide
Quentin O'Brien
@qeobrien
Abdo Alwahab
@care4abb
Abdo | 7 y.o. Libyan little boy fighting rare disease (MPS I) We lost his two sisters — now time is running out 💔 Seeking urgent treatment abroad #SaveAbdo
Miriam SR
@miriams14576699
Presidente de ADCUM - Errores Innatos del Metabolismo. Directora General de FECROG - Federación Pediátrica de Enfermedades Crónicas y/o Genéticas Perú
Amy
@holdmycape
Momma to five superheroes. We smash, we Assemble, and we form leagues and we are Groot. We believe everyone has a story and one person can make change
Tiphany Ellington
@tiphanyellingt1
Fighting Moyamoya disease, brain hemorrhage and stroke survivor. Mother to 5 wonderful children and 5 beautiful grandchildren❤️ CashApp $Nu2UOld2Me
Mónica Furlano
@m_furlano
Nephrologist, Inherited kidney diseases working group #GTERH @SENefrologia, @FPuigvert, @EuRefNetwork @UABarcelona 🌟@mfurlano.bsky.social
PlusIncUSA
@plusincusa
PlusInc is designed to improve health disparities among marginalized communities in the United States.
SCN1B
@b_scn1
Sodium channel 🧬 Epilepsy 🧬 Scn1b news & awareness 🧬 Sharing and re-tweeting SCN1B info 🧬
Jill Hawkins
@fam177a1mamma
Founder and President, FAM177A1 Research Fund
Francesca Morales
@malansunflower
Malan Syndrome
Thomas Vondra
@thomasvond92426
Psych Doc
@nomoretired2023
at the crossroads between #RareDisease, #Healthcare, and what-the-f%$%
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
Sarah Lewis
@sarahlewis10379
DNA INSTITUTE
@mydna_institute