Rare Disease Ghana Initiative
@rarediseasegh
A nonprofit organisation with the mission to improve the quality of life of persons living with #rarediseases in Ghana. #Awareness #Advocacy #Research #Support.
ID: 917593316136509440
http://www.rarediseaseghana.org 10-10-2017 03:31:09
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Dr. Jason Vassy
@jasonvassy
Primary care physician and genomic medicine researcher @VABostonHC | Assoc Prof @HarvardMed | @BrighamWomens | @Genomes2People
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
christina 🇰🇪
@cmutena
Here to leave the world better than I found it .. 🌻🍷
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Ercan KÜÇÜKARSLAN
@ekucukarslan
Ortaköy 80.Yıl Mesleki ve Teknik Anadolu Lisesi (VET Center) Electronics teacher
YoungGiftedBlack
@deaidras
conscious Catholic • global health geek • trauma survivor • rural millennial • @Georgetown • @columbiajourn • @LSHTM • opinions fantastic & my own
IFOPA
@ifopa
Fund research to find a cure for FOP while supporting individuals and families through education, public awareness and advocacy.
PIP-UK
@polandsyndromep
Poland Syndrome Charity facebook.com/pip.uk.org Poland Syndrome is a rare birth difference affecting hands and chest.
Simonetta Z.
@simozzzzz
former General Manager at @ICBDSR (retired January 2024)
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
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.
Inês Alves
@inesa_beyond
People’expert on Skeletal Dysplasia, CHRC-University of Évora, COMP-EMA member, ERN BOND ePAG, European Rare Bone Forum board member
RarasNoInvisibles
@noinvisibles
Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Nancydi 💙🖤💙
@nancydisalvo
Guillain-Barrè Syndrome survivor - CIDP warrior. My motto is “Never give up” with Faith & courage. Inter fan forever 🖤💙
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
Flutters and Strutters (Formerly FibroFlutters)
@fibroflutters
Non Profit for chronic (FibroFlutters) & rare illnesses (ZebraStrutters) Patient Advocacy Organisation Reg. No. 14065901
MITSolve
@solvemit
We believe that to achieve a more sustainable and equitable future for all, we need new voices and solutions. Join us in our mission to find and scale the best.
Iván Martínez Duncker MD ScD
@dunckeruaem
Glycobiology and Molecular Diagnosis. #enfermedadesraras. SNI 2. Universitario 👨🏼🏫👨🏼🔬 por una sociedad empoderada💪. Grill &🍺 Opiniones personales.
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Ovid Therapeutics
@ovidrx
Conquering brain conditions with courageous science. Our guidelines: bit.ly/2tqxeid
IRDiRC
@irdirc
#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
GlobalSkin
@iadpo
The International Alliance of Dermatology Patient Organizations is a global voice for skin patient-centred research, advocacy & support.
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 linktr.ee/dazzle4rare
NCBRS Worldwide Foundation - Nicolaides Baraitser
@ncbrsfoundation
Our aim is to help families by providing practical advice, annual conferences, raising awareness of #NCBRS and possibly help to fund any future research studies
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Jennifer Ambolley
@10thmay_finest
A phenomenal woman| Award winning Journalist| Menstrual Health advocate|Rare Disease Advocate| Public Health Advocate| SRHR Advocate | SDG 3&5
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
N-of-1 Hub
@nof1hub
N-of-1 Hub is the market leader in consultancy, collaboration and training in personalised clinical studies (N-of-1 trials and Single-Case Designs.
Ramie✨
@ewuramaosei
Dum Spiro Spero 🌤️
Tika Tkemaladze
@tikatkemaladze
Clinical geneticist, Head of the Department of Molecular and Medical Genetics, at TSMU, passionate about rare and undiagnosed diseases
Mercy Rophina
@mercy_rophina
Post Doctoral Fellow, New York University Langone Health
Hon. Frank Annoh-Dompreh
@fannohdompreh
MP for Nsawam Adoagyiri | Minority Chief Whip of the 9th Parliament of Ghana | Environmentalist |PAP memb.| Clean Energy | Youth Advocate, led NUGS. The Spear.
Ghana Psychological Association (GPA)
@ghanapsyc
Ghana Psychological Association (GPA), is an Association of practitioners, researchers and Students in the field of Psychology and applied Psychology in Ghana.
Sarah Wynn
@swynn_unique
CEO @unique_charity. All views my own.
Chronicity Care Africa
@chroncareafrica
Twitter account for the Chronicity and Care in African Contexts Project. Led by @adegraftaikins @UCL_IAS. Funded by @BritishAcademy_.
MANZI Ndamukunze
@mndamukunze
Renforcement des Capacités - AT en finance inclusive (capacity building-TA in i.f.) Engaged for Persons Living with a Rare Disease (PLWRD) with CENTRE-ALLIANCE
CDG CARE
@cdgcareorg
CDG CARE is a nonprofit organization founded by parents to support families affected by Congenital Disorders of Glycosylation.
RiO☆
@rio_9_
#あっ！#討論カフェin新宿御苑 #駒沢公園でモルックチーム作りたい人集まれ！ #奥田民生2012年より222を発症 #RDD/障害福祉とは？/ プレやっと5mg/#落語すき/COTEN crew/Spotify DiverSearch inc
Chromosome 22 Central
@c22central
🧬C22C official. Support & info for chromosome 22 disorders. 22q11-, 22q11Dup, Emanuel Syndrome, PMS, 22q13-, Trisomy 22, Cat Eye Syndrome #c22c #genetics🧬
Kwabena Mintah Akandoh
@kmakandoh
MP for Juaboso, Minister of Health
Rahema
@rahema_ucl
The Neurogenetics Lab @IonSynapse @UCLIoN. Interested in Neurogenetics, Public Engagement, Science Communication & Innovation
CYSHCNet - Pediatric Health Systems Researchers
@cyshcnetwork
Our researchers & lived experience partners work to improve the health care system for children & youth with special health care needs and their families.
Rare Melanin
@raremelanin
Amplifying Black Experiences in Rare Disease: Your Voice, Our Mission | WE’RE ON A X HIATUS, COME FOLLOW US ON TIKTOK, INSTAGRAM AND THREADS
Emirates Scholar Research Center
@emiratesscholar
Emirates Scholar Research Center encourages and reinforces the academic research. This activity contributes to diagnosing, analysing, and addressing critical ad
Robin Powers-keynote, panelist, educator, advocate
@robinpo54612760
EMpowering the differently - abled (as no one can do it all) to challenge the status quo when they see injustice. To never quit or back down when you just know.
SSADH Awareness
@awarenessssadh
#RareDisease #SSADH Awareness Account / #SpecialParenting / Support @SSADHeV / Opinions are my own / Calvin&Hobbes to lighten the mood / Tweets 🇩🇪&🇬🇧
Gillian Sapia RN
@gillianhsapia
Rare Disease mom. Legislative Advocate and Activist. Opinions expressed are MY OWN and do not reflect the views of any organization, employer, or other entity.
Aristotlektv
@aristotledada
Democrat|| Politician||Law student|| Youth Activist || Leader. TikTok-AristotlekTv
Soph Thomas
@sophthomas5
Libby Humphris
@libbyhumphris
Co-lead Public Involvement @EvidenceWales Honorary Research Associate @CUmedicengage Multiple chronic health issues, Crocheter 🧶
Sari Assaf
@sariassaf3
MD-PhD program, Sackler Faculty of Medicine Tel Aviv University, The Laboratory of Molecular Dermatology Tel Aviv Sourasky Medical Center
RareDiseasesGreece
@rarediseasesgr
"#RareDiseases Greece" is the Greek RD Federation dedicated to improving the quality of life of all those affected by rare disorders | #ΣπάνιεςΠαθήσεις #Υγεία
Rare Disease Clinical Trial Network, Ireland
@rare_trial
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.
rareparenting
@rareparenting
Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
Barbie for Congress (FL-11)
@barbie4congress
Democratic Nominee for U.S. Congress, FL-11 The Villages to the west, DisneyWorld to the East & the incredible areas in between Rare Disease Advocate, MLD mom
Rare Disorders Kenya
@rarediseaseke
United Voice for the Kenyan Rare Disease Community! #PatientDriven #RareDiseaseKE
Ernest Aryeetey
@profearyeetey
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Prof. Toshi Yokota PhD FCAHS @MD_Canada Res Chair
@toshifumiyokota
Garrett Cumming@MD_Canada Research Chair, Co-founder&CSO: OligomicsTx #Antisense #CRISPR #RareDiseases Trained @UTokyo_News @NCNP_pr @ImperialMed @ChildrensNatl
Ataxia and Me CIO 1184030
@ataxia_and_me
#Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
Iamtheking
@nanaagyeip
Nana Kofi Quakyi, MPH
@nkquakyi
Akropong krakye | Health Systems Research, Policy & Advocacy | Acting Country Director at @AurumInstitute Ghana | Views mine
ERN EuroBloodNet
@erneurobloodnet
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases
Bra_Kojo
@antwibrainard
The ED Society
@edsocietyuk
Our vision is that every individual affected by Ectoderma Dysplasia is equipped with the knowledge needed to manage ED effectively and live life to the full.
Philippe Pakter
@philippepakter
Director of patient advocacy group for children suffering from the rare disease, Pierre Robin Sequence. Rare disease dad.