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.

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A third letter to President Macron

On 12 October 2018 we sent a third letter to French President Emmanuel Macron…
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European Patients Forum – letter of support

The European Patients Forum is the largest patient advocacy umbrella organization in Europe. They wrote this letter below, and they mailed it, directly to France’s President, President Macron. Read more

Françoise Grossetête, Member of European Parliament – letter of support

Ms. Françoise Grossetête, a senior Member of European Parliament, has a background in law – and Ms. Grossetête personally served as the European Parliament’s Special Rapporteur for the EU’s 2011 Directive on Cross-border Healthcare. Ms. Grossetête knows cross-border healthcare law. On our daughter Lysiane’s behalf, she sent the letter below directly to France’s Minister of Health, Agnès Buzyn, making it clear that this situation is “unacceptable”, and that the rejection was legally unfounded.

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EURORDIS – letter of support

The European Organisation for Rare Diseases (EURORDIS) is the largest rare disease patient organization in the EU. EURORDIS wrote a highly detailed letter of support to L’Assurance Maladie, France’s national health insurance fund, explaining why they too believe the rejection violated EU law. EURORDIS has pledged to accompany us, Lysiane’s parents, in court, all the way up to the European Court of Justice. Read more