#RareDisease Patient Advocates: Follow These 25 Twitter Accounts

by Robert Pleticha

We collected our favourite 25 Twitter accounts that any #RareDisease patient advocate on Twitter should be following:


RareConnectHereConnecting rare disease patients globally. RareConnect is a social network for rare disease patients, families & patient groups. A EURORDIS & NORD partnership. rareconnect.orgPatient group
EURORDISHereWe are a non-governmental European alliance of patient organisations and individuals dedicated to improving the lives of people living with rare diseases.Patient group
NORDHereNational Organization for Rare Disorders (NORD) is the voice of the rare disease community.Patient group
NIH for HealthHereNIH…Turning Discovery Into HealthGovernment
NPR Health NewsHereHealth coverage from the NPR Science DeskJournalism
European Cancer Patient CoalitionHereThe European Cancer Patient Coalition gives more than 300 cancer patients organisations a voice in the EU – from the major to the rarer cancers.Patient group
Francis CollinsHereFrancis S. Collins, M.D., Ph.D., NIH Director. NIH…Turning Discovery Into HealthGovernment
European Medicines AgencyHereLatest news from the European Medicines Agency, the European Union agency responsible for the evaluation and supervision of medicines.Government
Andrew JackHereAndrew Jack writes for the Financial Times on pharmaceuticals and health. Other interests:UK, Russia, France, Africa, non-profits and culture.Journalism
Faster CuresHereFasterCures: It’s not just our name. It’s our mission.Non-Profit
FEDERHereSomos la voz de 3 millones de personas con Enfermedades Raras en España. Representamos a más de 200 asociaciones de pacientes y a más de 1.500 patologías.Patient group
Susanah FoxHereInternet geologist. Health care gadfly. Community colleague. @PewResearch.Non-Profit/Individual
Rare Disease UKHereRare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them.Patient group
NIH Office for Rare Disease ResearchHereNIH Office of Rare Diseases Research (ORDR) rarediseases.info.nih.govGovernment
Genetic Alliance UKHereGenetic Alliance UK is the national charity of patient organisations with a membership of over 150 charities supporting all those affected by genetic conditionsPatient group
Foundazione Telethon ItaliaHereDal 1990 Telethon raccoglie fondi per finanziare la migliore ricerca sulla distrofia muscolare e le altre malattie genetiche rare.Foundation
Fondation GroupamaHereLa Fondation Groupama pour la santé soutient la lutte contre les maladies rares, les maladies orphelines. Vaincre les maladies rares.Foundation
Kate BushbyHereClinical Professor at Newcastle University: translational research/ care for rare diseases, especially muscular dystrophies.Non-profit/Individual
RD-ConnectHereAn integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.Project
European Patients’ Academy on Therapeutic InnovationHereEUPATI is the patient-led collaborative project to educate patients & the public about medicines R&D patientsacademy.euProject
Valentina BottarelliHereEU Public Affairs Senior Advisor. EUROPLAN project leader.Non-profit/Individual
Téléthon FranceHereCompte officiel de l’AFMTéléthon. Soutenez la recherche par un don http://www.telethon.fr  #telethon2013 #telethon #3637 #tetvFoundation
Jan GeisslerHereCommitted patient advocate and social media geek.Non-profit/Individual
Eibhlin MulroeHereWorking at IPPOSI ipposi.ieNon-profit/Individual
Rare Disease DayHere28 February 2014 is Rare Disease Day. Raising awareness for patients, families and carers living affected by rare diseases worldwide. #rarediseaseEURORDIS

Know a Twitter account that could be useful to other #RareDisease patient advocates?

Tweet it to us: @RareConnect

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