Become a Member of the 17q12 Foundation
Joining the 17q12 Foundation will help to keep you up-to-date on the latest information regarding 17q12 deletion and 17q12 duplication syndromes. New members become part of a growing organization of individuals who share the same vision: to improve the quality of life of people with 17q12 deletions and duplications by increasing awareness, advancing research and providing family support.
Benefits of 17q12 Foundation membership:
*Receive our newsletters, conference announcements and other Foundation communications.
*Access to exclusive online support group (through Facebook)
*Contribute to research and scientific advancement
*Our membership list allows us to keep track of the number of people with 17q12 CNVs, which is important for researchers to get funding for their projects.
*Our membership list also allows us to easily reach out to families when new research opportunities are available. All research participation is optional. Joining the Foundation does not automatically enroll you into any research studies.
*Family match program
*We will be able to quickly search our membership for families that live in the same region, which will allow us to connect families that may be close enough to meet in person.
*International 17q12 Registry
*The registry will be a formal database that collects detailed health and developmental history information for individuals with 17q12 CNVs
*It is important for characterizing the syndromes to allow for publication and development of practical management guidelines
*It will be able to help scientists identify individuals with similar symptoms/features that may be good candidates for their research studies
*The data collected by the registry will be secured and de-identified to protect your privacy