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
ID: 19982434
http://www.rarediseaseday.org 03-02-2009 16:44:43
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FEDER | Enfermedades Raras
@feder_ong
👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 422 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Unique
@unique_charity
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner.
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.
The Jackson Laboratory
@jacksonlab
Est. 1929, JAX is a non-profit scientific research institute specializing in 🧬 genetics, 🧮 genomics & 🐁 mouse models of disease. instagram.com/jaxlab
Twibbon
@twibbon
A Twibbon campaign is your very own microsite where users can support your cause, brand or organisation in a variety of ways.
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
🇪🇺 Ilaria Galetti 🇸🇩
@iaiaraia
SSc patient advocate Vice Chair of FESCA and GILS, ERN ReCONNET ePAG, Equal access to therapies is my obsession
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Tessa Fleming
@tessa_niadh
Iriseoir ✒️ Léiritheoir 📻 Láithreoir 📺
FADEPOF
@fadepof
Federación Argentina de Enfermedades Poco Frecuentes
World Obesity
@worldobesity
The World Obesity Federation is a not-for-profit devoted to addressing the global #obesity burden. Learn more: linktr.ee/worldobesityfe…
CML AdvocatesNetwork
@cmlnet
CML Advocates Network: Network of 128 chronic myeloid leukemia patient groups in 93 countries. #CML #Leukemia #CureCML #PatientAdvocacy
Sickle Cell Society
@sicklecelluk
The Sickle Cell Society supports and represents people affected by sickle cell disorder to improve their overall quality of life.
Rare Disease UK
@rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
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.
SMA-Europe
@smaeurope
SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
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.
European Patients' Forum
@eupatientsforum
We are the leading voice of patient organisations in Europe. #EuropeForPatients
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
IPOPI
@ipopi_info
IPOPI is the association of Primary Immunodeficiency national patient organisations. Improving awareness, access to early diagnosis and optimal treatments.
Rare Aware
@rare_aware
Our RARE ACTIVist programme needs YOU to help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community.
Rijetke Bolesti
@rijetkebolesti
Hrvatski savez za rijetke bolesti okuplja druge udruge i pojedince koji boluju od rijetkih bolesti.
UK Thalassaemia Society
@teamukts
We support families & professionals, educate, campaign for change & fund research.
22Q11 Ireland
@22q11_ireland
Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
UAE Mission to the UN
@uaemissiontoun
Official account of the Permanent Mission of the UAE to the UN. Representing 🇦🇪 and advancing its role as a bridge-builder across the multilateral system.
CORD
@raredisorders
CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
ORDIndia
@ordindia
National rare disease advocacy, 24/7 patients hotline, engage Hospitals, Physicians, Pharma/Biotech/Dx industry, Orphan drugs act for India, Global Alliances
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Raquel Peck 🇧🇷 🇬🇧
@raqpeck
Consultant supporting change actors 🌎 | Ex CEO of @Hep_Alliance | Co-Founder @WGHLusofonia | #NOhep pioneer | #patientengagement #policy #rarediseases #health
Williams Syndrome UK
@wsf_uk
Virginie Hivert
@virginiehivert
Therapeutic Development Director @eurordis
Raras pero Reales
@rarasreales
Sanofi, comprometidos con el descubrimiento de terapias para pacientes con #EnfermedadesRaras. pro.campus.sanofi/es/legal/polit…
Rare Disorders NZ
@raredisordersnz
Rare Disorders NZ is the connector hub and collective voice of rare disorders in New Zealand.
Ali Kimara Rare Disease Foundation (AKRDF)
@alikimara
Our purpose is to raise awareness and advocate for the consideration and inclusion of children living with the rare diseases in health and education systems.
Asociación FFPaciente
@ffpaciente
Únete a la comunidad de #FFPaciente.Asociación #FFPaciente sin ánimo de lucro creada para dar voz y visibilidad a los #pacientes a través de las redes sociales
Rare Diseases IORD
@rarediseases_in
Indian Organisation for Rare Diseases (IORD) is a not-for-profit umbrella organisation with presence in India & USA, working for all rare disease stakeholders.
PSODCareForRare
@psodcareforrare
Official Account of Philippine Society for Orphan Disorders #CareForRarePH 🇵🇭
Rare Disease Malaysia
@malaysiarare
Rare Disease Malaysia
ERN GUARD-Heart
@ernguardheart
ERN GUARD-Heart is part of the European Reference Networks for rare or low-prevalence disease and focuses on rare and complex diseases of the heart. @AMC_nl
European Reference Network on Rare Bone Diseases
@ern_bond
Share. Care. Cure.
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.
ERN CRANIO
@cranio_ern
The European Reference Network for rare and/or complex craniofacial anomalies and ENT disorders
95, Rare Alliance Greece
@95rare
95, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare & an undiagnosed #RareDisease 🔺 #ΣπάνιεςΠαθήσεις #Υγεία
Australian NPC Disease Foundation Inc
@niemannpickoz
Australian Niemann-Pick Type C Disease Foundation is a not for profit organization that is trying to raise awareness and funds for research into a cure.
World Obesity Day
@worldobesityday
Together we can create a healthier future.
Sickle Cell Awareness Foundation
@awareness_cell
Dr Dexter's/CEO-SickleCellFoundatio /Aware the people for sickle cell.(work for decrease SickleCell Birth & SCD Mother Mortality).Sicklestory#Writer#Blogger
APARDO
@apardo_official
Asia Pacific Alliance of Rare Disease Organisations (APARDO) is a non-profit organisation consisting of patient advocate leaders from across the APAC.
Illness Challenge Foundation
@bn2challenge
The Beijing Illness Challenge Foundation (ICF) is the first public welfare foundation in Beijing focusing on rare diseases.
ALIBER
@inforaliber
Alianza Iberoamericana de Enfermedades Raras, Huérfanas o Poco Frecuentes. Somos referente en defensa de derechos de 42 millones de afectados en Iberoamérica.
Rare Disease Action Forum
@rdaf_rare
The Rare Disease Action Forum (RDAF) is a nonprofit multi-stakeholder organization dedicated to improving lives of patients with rare diseases in Switzerland.
Erik
@erikruizmar
Programme manager at @HCWHeurope | Advocating to tackle pharmaceutical pollution and antibiotic resistance | Ex @Europarl_en, @EURORDIS | Views=mine
Pensemos en Cebras México
@pcebras
Iniciativa Pensemos en Cebras México sumando esfuerzos y aglutinando acciones enfocadas en la detección, diagnóstico, tratamiento y atención temprana e integral
Screen4Care
@screen4care
Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
Ariane Weinman
@weinmanariane
EURORDIS-Rare Diseases Europe Public Affairs Senior Manager
Rare Disorders Zimbabwe
@childyouthcarez
Supporting the interests of children living with rare medical diseases.# inherited bleeding disorders #health education # quality care# early diagnosis
Rare Disorders Kenya
@rarediseaseke
United Voice for the Kenyan Rare Disease Community! #PatientDriven #RareDiseaseKE
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]
Rare Diseases Malta
@rarediseasesmt
The National Alliance for Rare Diseases Support – Malta
Una Esperanza para Fernanda
@hope4fernandasv
Maria Fernanda padece #TRAPS una enfermedad autoinflamatoria incurable, pero si con tratamiento sumamente caro. Por eso pedimos de su ayuda. #RareDiseases
ERN RARE LIVER
@ern_rare_liver
A major opportunity for better treatment for patients with rare liver disease in Europe
_ERNRITA
@_ernrita
ERN for Rare Immunodeficiency, autoinflammatory, autoimmune and paediatric rheumatology Diseases - For all patients with rare immune disorders in Europe
RareEndoERN
@rareendoern
#EuropeanReferenceNetwork Connecting care in the EU for patients with rare endocrine conditions.
ERN eUROGEN
@ern_eurogen
Improving diagnosis, treatment & care for rare uro-recto-genital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
Noah Higón Bellver
@nh487
Vivo más de lo que puedo, sueño aún como niña y sobrevivo a golpe de gotero. Jurista, politòloga i escriptora. #EERR 💜🦻🏼📩 [email protected]📗👇🏼
Malaysian Invisible Illnesses Association (MIIA)
@miiaorgmy
Make invisible illnesses, visible.
UAE Rare Disease Society
@uaerds
الحساب الرسمي لجمعية الإمارات للأمراض النادرة The official account of the United Arab Emirates Rare Disease Society #UAERDS
Solve-RD
@solve_rd
Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.