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On the occasion of the DIA President’s Award for Outstanding Achievement in World Health
Full acceptance speech of Yann Le Cam (Chief Executive Officer, EURORDIS) on the occasion of the presentation of the nonprofit Drug Information Association (DIA) President’s Award for Outstanding Achievement in World Health
Through you, Dr Su, President of DIA. I express our gratitude to each member of the DIA’s Board of Directors as well as to [...]
Latest posts
Developing a cure for Black Bone Disease: are we nearly there?
So here we are, at last: the culmination of 10 years of work. We’re launching the first of three studies as part of our EC-funded clinical development programme for nitisinone as a treatment for Black Bone Disease, or Alkaptonuria (AKU for short) as it’s known in the scientific community.
It’s been a challenging journey, to say [...]
On the occasion of the DIA President’s Award for Outstanding Achievement in World Health
Full acceptance speech of Yann Le Cam (Chief Executive Officer, EURORDIS) on the occasion of the presentation of the nonprofit Drug Information Association (DIA) President’s Award for Outstanding Achievement in World Health
Through you, Dr Su, President of DIA. I express our gratitude to each member of the DIA’s Board of Directors as well as to [...]
Rare Disease Day 2013 Improving patients’ access to orphan medicinal products in Europe based on increased EU coordination
Paris, 21 February 2013 – A press conference to launch the sixth Rare Disease Day focused on discussions underway with the European Commission and other stakeholders to accelerate access to medicines for rare diseases and to streamline national processes for pricing and reimbursement decisions.
Building on the ongoing policy debate on the EU Directive on Transparency, [...]
National strategy for rare diseases, how do we do now? EUROPLAN National Conference in Sweden
National strategy for rare diseases, how do we do now? That was the headline on Monday (2012-11-26) EUROPLAN conference at Scandic Anglais in Stockholm. Similar conferences are made in several locations in Europe to follow the development and influence the national plans now to be developed for rare diseases. The association has initiated the Swedish [...]
Testimonial from Cees Smit on the advice on the treatment and reimbursement for patients with Fabry and Pompe Disease
Intervention of Cees Smit on behalf of EGAN at the Public Hearing by the Package Expert Committee of the Dutch Healthcare Insurance Board (CVZ) on continuing or not to reimburse the Pompe and Fabry Treatments
First of all, words of appreciation for the patients of the Fabry Association for your personal contributions and especially [...]
Categories
Access to treatments»
- Rare Disease Day 2013 Improving patients’ access to orphan medicinal products in Europe based on increased EU coordination
- Testimonial from Cees Smit on the advice on the treatment and reimbursement for patients with Fabry and Pompe Disease
- Sept 21, 2012: EURORDIS intervention at Dutch Healthcare Insurance Board public hearing
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CEO EURORDIS
CEO, NORD- Director of the Office of Rare Diseases (ORD) at the NIH
- President, EURORDIS
