Who are we?
The Phelan-McDermid Syndrome Association is made up of parents, family members and those affected by the syndrome. They have come together to provide resources for their current and future members to cope with the challenging and rewarding task of bringing up a child with the syndrome.
Our main objective is to make sure the families have access to reliable and updated information about the syndrome and to promote research into finding solutions for this disorder. And, most importantly, to offer a mutual aid/support community.
We collaborate from Spain with the international Phelan-McDermid Foundation, established over 10 years ago. We are a strong international support community, where those affected by the syndrome can find acceptance, comfort, information and practical advice.
We attend to the needs of our families in many ways, including through a global communications network and important investments in research. We share our hope that one day the debilitating effects of the syndrome will be mitigated or even reversed.
Through Facebook and Twitter groups and regional networks, we prepare families to be effective defenders in medical, educational, and research communities.
Families can join our community by becoming members via the Collaborate section on this website. It is also possible to register on pmsf.org to provide medical reports that can help doctors and scientists with their research and form part of the international community.