Letter to EU Health Commissioner Kyriakides

On 5 December 2019 we sent a letter to EU Health Commissioner…

Pierre Robin Sequence - Information Document for Parents

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

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…