Our French association was created in January 2014 in France. It is an association governed by the French law of July 1, 1901, and has the title: Association "Téhani et les enfants Phelan-McDermid", it is recognized of general interest.
The first year of its creation we felt very isolated, we wanted to bring more public awareness about the Phelan-McDermid syndrome, raise funds to allow families with Phelan-McDermid kids to buy medical and educational equipment and go to the United States to meet members of the international Phelan-McDermid Syndrome Foundation (PMSF).
The statutes of the association have since opened up to other families in France and Europe. Our association is now recognized as being of general interest, and has signed agreements with the Timone hospital which is the reference center for rare epilepsy in France. We are also part of the handiprêt network to facilitate any loans of specific equipment between members of our association. Finally, we also support and work closely with the Phelan-McDermid programme from the Pasteur Institute, in Paris and the Phelan-McDermic Syndrome Foundation in the United States.
Our French non-profit association aims to:
Raise public awareness on the Phelan-McDermid syndrome in France
Provide support to people suffering from a rare disease
Raise funds for research on the Phelan-McDermic syndrome
Provide financial and moral support to families with PMS *
Organize conferences with Phelan-McDermid researchers, and doctors, and families
Because Tehani's dad is Polynesian, we have great support from the Polynesian community and participate in various South Pacific Festivals that take place all over France.
We are looking forward to meeting you and getting to know you!
* PMS = with Phelan-McDermid syndrome