Pro Rare Austria – letter of support

Pro Rare Austria took center stage at the European Conference on Rare Diseases which was recently held in Vienna. As explained by Pro Rare Austria’s Chairman, Dr. Rainer Riedl, “With rare diseases, the sharing of knowledge, the exchange of expertise, as well as networking and cooperation, are particularly important.” In their letter to France’s L’Assurance Maladie, they ask the Director, Nicolas Revel, to revise the unfounded rejection of Lysiane’s right to a safe and medically proven treatment in Germany.

Below is the text contained in the letter. Beneath the text is a PDF of the actual letter.

13 December 2018

M. Nicolas Revel
Directeur Général
Caisse Nationale d’Assurance Maladie
50, Av. Du Prof. André Lemière
75986 Paris Cedex 20

Ref: Access to Cross Border Healthcare, child Lysiane Pakter, EU Directive 2011/24/EU

Monsieur le Directeur Général,

Pro Rare Austria is the Austrian Alliance for Rare Diseases, which takes part in Health strategies, and advocates for the rights of patients with rare diseases in Austria. As a member organisation of the European Organisation for Rare Diseases (EURORDIS), we are involved in European Health Strategies, and advocating for the rights of patients with rare diseases on the European level.

We are writing to you to ask you to revise your unfounded denial of the baby’s right to the most effective treatment provided in Germany.

EURORDIS in their letter (17 November 2017), attached, already pointed out the legal and medical analyses – evidence for safety, efficacy, and cost effectiveness of the treatment in Germany – which we fully endorse.

We raise our voice and ask you to give your approval (S2) and to accept the family’s claim to have their rights respected under the EU Directive, thank you!

Nous vous prions d’agréer, Monsieur, l’expression de nos salutations les plus sincères,

Mag. Dominique Sturz
Member of the Executive Committee
Secretary, Pro Rare Austria

Dr Rainer Riedl
Member of the Executive Committee
President, Pro Rare Austria