Our letter of appeal to France’s President, President Macron

Below is our letter to France’s President, President Macron. Part 1 presents the key background information, and describes our rare disease patient journey. Part 2 presents a medical analysis, which compares various Pierre Robin Sequence treatments. Part 3 presents a legal analysis and a conclusion.

The letter provides information which we believe may be useful to parents whose babies suffer from Pierre Robin Sequence, and to healthcare providers who care for these babies.

The letter’s core principles are likely to resonate with patient advocates and policy makers, especially those working in the areas of rare diseases, patient centered care, and the right to access care.

Finally, the legal analysis may interest lawyers and academics seeking a real life case study of the EU’s 2011 Cross-border Healthcare Directive, the EU’s Regulation 883 on the Coordination of Social Security Systems, and the fundamental principle of the freedom to provide and receive services in the EU under Article 56 of the Treaty on the Functioning of the European Union.

This letter shows what can actually happen right here in affluent Western Europe when an EU citizen tries to put theory into practice, and exercise the rights which these EU laws supposedly protect.

We hope this  letter of ours will lead someone in President Macron’s administration to take action, and correct this injustice. However, no matter what happens, with President Macron, or with his successors, we will never give up. As the dedicated and loving parents of a baby born with a rare disease, we are fully committed to fighting on behalf of our child, no matter how long it takes, until her legal rights are vindicated. We will fight this injustice nonstop for the next 10 years, all the way up to the Court of Justice of the European Union, if the French government forces us to do so. But we will never give up.

You can also view the letter as a PDF, which you can download and read offline: