Rare Disease Blogs

International opinion & debate from opinion leaders in the fields of Rare Diseases & Orphan Drugs

[Rare Disease Blogs @rarediseaseblog]

Today is #RareDisease Day, the day to put rare diseases in the spotlight! Show your solidarity today! http://t.co/Mim7CG0k8l

[Rare Disease Blogs @rarediseaseblog]

New blog post from @eurordis CEO Yann le Cam: #RareDisease Therapies: Unlocking Europe’s Potential http://t.co/uZjsrAqIa1

[Rare Disease Blogs @rarediseaseblog]

I just supported International Rare Disease Day on @ThunderclapIt // @rarediseaseday http://t.co/220qmB9t59

[EURORDIS-Rare Diseases Europe @eurordis]

Less than 2 weeks to submit your poster to the European Conference on #RareDisease 2014 Berlin http://t.co/2B05lrbOzd Please RT

[Rare Disease Blogs @rarediseaseblog]

100 days to @rarediseaseday on Feb. 28th 2014 #raredisease Get Involved today http://t.co/hcNW5lCQ09

[EURORDIS-Rare Diseases Europe @eurordis]

Access and sustainability of orphan drugs, @eurordis CEO Yann le Cam to give patient view at #orphanconf #raredisease http://t.co/5JASG7z2Qv

[Rare Disease Blogs @rarediseaseblog]

Yann le Cam @eurordis on the impact of the new EU Data Protection legislation on health and medical research http://t.co/kwQrLd7Zro

[EURORDIS-Rare Diseases Europe @eurordis]

"Gleevec has received billions in profits as a “blockbuster” drug. Its time Gleevec gives way to generics" OrphaNews http://t.co/Nh81E1no1v

[EURORDIS-Rare Diseases Europe @eurordis]

View Yann Le Cam from @eurordis give a message about @rarediseaseday "Rare Disorders without Borders" #raredisease http://t.co/hhi64OEV

[Rare Disease Day @rarediseaseday]

Official 2013 #RareDisease Day video just released http://t.co/0xJzctCj Rare Disorders without Borders. RT please?

[Rare Disease Blogs @rarediseaseblog]

New blog post: Latest update on the EUROPLAN #RareDisease National Plan Conference in Sweden http://t.co/fjt6neYE

[Rare Disease Blogs @rarediseaseblog]

New Blog post from @eurordis President Terkel Andersen: Solidarity with the #RareDisease community in Spain http://t.co/aRi3FDRN

[Rare Disease Blogs @rarediseaseblog]

Intervention of Yann Le Cam, EURORDIS at Public Hearing of Dutch payor on reimbursement of Pompe and Fabry Treatments http://t.co/gDMqEeM3

[Rare Disease Blogs @rarediseaseblog]

Dutch Health Insurance Board to maintain reimbursement of orphan drugs for Pompe and Fabry #raredisease #empoweratm http://t.co/mNelUqrB

[Rare Disease Blogs @rarediseaseblog]

New post from Nick Sireau of AKU Society: Access to Medicine: A Campaign for #RareDisease Patients to access treatments http://t.co/r5LebY7e

[Rare Disease Blogs @rarediseaseblog]

Update (Part III), Aug 23 on the Pompe and Fabry discussions in the Netherlands relating to access to Orphan Drugs http://t.co/gzUUtS9k

[Rare Disease Blogs @rarediseaseblog]

An update on the Pompe and Fabry disease access to treatment situation in the Netherlands from Cees Smit http://t.co/0YKukS9k #raredisease

[Rare Disease Blogs @rarediseaseblog]

Patient advocate Cees Smit challenges advice from Dutch authorities not to reimburse critical Orphan Drugs http://t.co/jwjHPjrY #raredisease

[RareConnect @RareConnect]

@eurordis is hiring a full-time Online Community Manager (Barcelona based) for @RareConnect http://t.co/tmzZnicK pls RT #Cmgr

[Rare Disease Blogs @rarediseaseblog]

Preconception & prenatal genetic testing, newborn screening of rare diseases: how to empower individuals? http://t.co/3e1WxSyP