We give our sincere thanks to our growing list of allies:
EURORDIS, the largest rare disease patient organization in the EU. EURORDIS sent a highly detailed letter of support to L’Assurance Maladie, 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.
A senior Member of European Parliament, Ms. Françoise Grossetête. Ms. Grossetête has extensive experience working with the EU’s 2011 Directive on Cross-border Healthcare; in fact she was the European Parliament’s special rapporteur for this Cross-border Healthcare legislation. Ms. Grossetête knows this law, and she too knows it was broken; she has sent a formal letter of support directly to France’s Minister of Health, Madame Agnès Buzyn, making it clear that this situation is “unacceptable”, and that the rejection was legally unfounded.
The European Patients’ Forum, the largest patient advocacy umbrella organization in the entire EU. The European Patients’ Forum was a key stakeholder in the drafting of the 2011 Cross-border Healthcare Directive; they too know this law. The European Patients’ Forum has sent a formal letter of support directly to the President of France, President Macron. In their letter they state that this situation is “shocking”, and that France’s rejection was legally unfounded.
Pro Rare Austria, an Austrian umbrella organization for rare disease patient advocacy groups. 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.
Rare Diseases Denmark, a leading rare disease advocacy group from Scandinavia, and a highly respected voice in the international rare disease movement. In their letter of support, they point out that the case of Lysiane “is a devastating example of the struggle that many rare disease patients and families have faced, and continue to face, right here in Europe.”
We thank you.
Chairman, Stichting Pierre Robin Europe (Pierre Robin Europe Foundation)
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Memberships and Affiliations
Stichting Pierre Robin Europe participates in the European Reference Network for Craniofacial Anomalies and ENT disorders, as an official European Patient Advocacy Group (“ePAG”). The European Commission:
“European Reference Networks (ERN) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources.
Between 6 000 and 8 000 rare diseases affect or will affect an estimated 30 million people in the European Union. Many of these rare diseases cause chronic pain and suffering, and a number of them can be life-threatening. The negative impact on the quality of life of affected patients, many of whom are children, is significant.
An unfortunate feature of rare diseases and complex conditions is the scarcity and fragmentation of specialist knowledge, which is often not available in the patient’s region or country. Many patients therefore do not find a satisfactory explanation for their symptoms or the necessary knowledge on treatment options. By consolidating knowledge and expertise scattered across countries, the ERNs will give healthcare providers access to a much larger pool of expertise. This will result in better chances for patients to receive an accurate diagnosis and advice on the best treatment for their specific condition.”
Stichting Pierre Robin Europe is a member of EURORDIS, the largest rare disease patient advocacy organization in the EU.
Stichting Pierre Robin Europe is a member of VSOP (Vereniging Samenwerkende Ouder en Patiëntenorganisaties), the main rare disease patient advocacy organization of the Netherlands.
L’Association Pierre Robin Europe , the international sister organisation of Stichting Pierre Robin Europe, is a member of ProRaris.
Online Communities and Support Groups
- Facebook Group, Pierre Robin Sequence, USA (English)
- Facebook Group, Pierre Robin Sequence, UK (English)
- Facebook Group, Pierre Robin, Australia (English)
- Facebook Group, Pierre Robin Sequence Support, Awareness & Research, South Africa (English)
- Facebook Group, Pierre Robin Sequence and Cleft Palate – Feeding (English)
- RareConnect, Pierre Robin Sequence (English)
- Facebook Group, Association Calin Volé, Syndrome Pierre Robin (French)
- RareConnect, Séquence de Pierre Robin (French)
- Facebook Group, Pierre Robin Sequenz D/A/CH (German)
For more information about Stichting Pierre Robin Europe, we welcome you to review our Annual Report. Our Annual Report is prepared at the end of each financial year, and then published on our website.