22q13.3 deletion syndrome

Patient Registry

Phelan-McDermid Syndrome Foundation

Those with a 22q13 deletion are welcome to enroll in the Phelan-McDermid Syndrome International Registry, funded by the Phelan-McDermid Syndrome Foundation. The purpose of this registry is to consolidate information from individuals with Phelan- McDermid syndrome into a single database to promote research on this rare genetic condition. Additional information about Phelan-McDermid syndrome research can be found through the Phelan-McDermid Syndrome Data Network (PMS_DN).

Last updated on 04-27-20

Where To Start

Unique - 22q13 deletion syndrome

Unique is a source of information and support to families and individuals affected by rare chromosome disorders. Click on the link to view information about 22q13.3deletion syndrome.

Last updated on 04-27-20

Name: Chromosome Disorder Outreach CDO PO Box 724
Boca Raton, FL, 33429 , United States
Phone: +1-561-395-4252 Email: https://chromodisorder.org/contact/ Url: https://chromodisorder.org/
Name: Chromosome 22 Central - US Office 7108 Partinwood Drive
Fuquay-Varina, NC, 27526 , United States
Phone: 919-567-8167 Email: usinfo@c22c.org Url: http://www.c22c.org
Name: Phelan-McDermid Syndrome Foundation P.O. Box 1153 8 Sorrento Drive
Osprey, FL, 34229, United States
Phone: 941-485-8000 Email: ronni@pmsf.org Url: http://www.pmsf.org
Name: Chromosome 22 Central 338 Spruce Street North Timmins
Ontario P4N 6N5
Email: info@c22c.org Url: http://www.c22c.org/
Name: Unique – Rare Chromosome Disorder Support Group G1, The Stables Station Road West
Surrey RH8 9EE
United Kingdom
Phone: +44 (0)1883 723356 Email: info@rarechromo.org Url: https://www.rarechromo.org/

Connect with other users with 22q13.3 deletion syndrome on the RareGuru app

Do you have information about a disease, disorder, or syndrome? Want to suggest a symptom?
Please send suggestions to RareGuru!

The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

People Using the App

Join the RareGuru Community

To connect, share, empower and heal today.

People Using the App