Pierre Robin Sequence - Information Document for Parents

Dear Fellow Parents, My family's one year old daughter, Lysiane,…

European Parliament’s Implementation Report on the 2011 Cross-border Healthcare Directive

In a time of growing populist movements, deepening economic uncertainty,…

Rare Disease Collaboration... and Obstruction

Even if global policies support rare diseases, all the way up…

Rare Diseases Denmark - letter of support

Rare Diseases Denmark, a leading rare disease advocacy group…

Pro Rare Austria - letter of support

Pro Rare Austria took center stage at the European Conference…

A third letter to President Macron

On 12 October 2018 we sent a third letter to French President…

European Patients Forum - letter of support

The European Patients Forum is the largest patient advocacy umbrella…

Françoise Grossetête, Member of European Parliament - letter of support

Ms. Françoise Grossetête, a senior Member of European Parliament,…

EURORDIS - letter of support

The European Organisation for Rare Diseases (EURORDIS) is the…