22q Central provides education for the medical community on 22q Deletion Syndrome / VCFS / DiGeorge Syndrome, provides support for affected families, resource support and support groups.
Chromosome 22 Central is a parent run support organization started in 1997 with just a handful of families who had children with what is now known as Emanuel Syndrome. Currently supporting over 2000 families in all corners of the world, who have many different chromosome 22 disorders.
Early on, the Internet was in its infancy, and 22q Central connected mainly by email lists. With social networking today, it is so easy to go on-line and instantly find supportive families who can help you.
22q Central offers basic information on the main chromosome 22 disorders on the website, but mostly they are about connecting and learning from each other on Facebook. You'd be amazed what parents can learn from each other. There is a wealth of information between us all.
22q Central is happy to advertise studies from researchers. You can click on the top tab to see which current studies you might be able to participate in.
22q Central receives no formal funding to support this website. All of our support comes from the generosity of our members.
1129 Carolina Gardens Ave.
Fuquay-Varina, 27526, AL
Ubicación accesible: No
Tipo de organización | Sin fines de lucro (501c3) |
---|---|
Categorías | Advocacy, Conferences, Disability Specific, Emotional Support, Health & Fitness, Medical, Training |
¿Se ofrecen servicios en Español? | No |
¿Tienen boletín informativo? | No |
¿Cuidado de niños disponible? | No |
Rango de edad | Todas las edades |
Categorías de discapacidad | Genetic or Congenital Disorder, Medical Condition |
¿Esta organización incluye todas las discapacidades? | No |
Esta organización incluye estos diagnósticos específicos | Síndrome de DiGeorge, Síndrome de deleción 22q11.2 |
¿Es este un servicio estatal? | yes |
Sitio Web | http://www.22qcentral.org |
Nombre de la persona de contacto | Stephanie Rese |
Correo electrónico | [email protected] |
Número de teléfono | 919-762-7979 |
¿Descubriste que hay un error? Sugiere la manera de corregirlo.