This beautiful, short video will give you a better understanding of Phelan-McDermid Syndrome and the strength, love and perseverance of the families raising a child born with this rare condition.
The purpose of this registry is to consolidate information from individuals with Phelan-McDermid Syndrome into a single database, which will be utilized by researchers to understand Phelan-McDermid Syndrome better. Sharing your medical data will make a world of difference.
Ontario Premier Kathleen Wynne today is taking part in a worldwide effort to raise awareness of Phelan-McDermid Syndrome. Ms. Wynne will be wearing a “Phelan Lucky” T-shirt in solidarity with thousands of others, including dozens in Canada, in support of those affected by the rare genetic disorder.
The Phelan-McDermid Syndrome Foundation is excited to announce the appointment of three new members to its Board of Directors. Geraldine Bliss, Abby Lievense Lagunoff and Joe Sammartino replace Directors Stephanie LeClerc and Brian Stack, whose terms expired.