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
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
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.
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

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