Useful Links
Useful Links
Last Updated on Tuesday, 04 May 2010 22:28
Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide and membership of Unique is free. They have also been a big help in the production of this website, giving permission for us to use parts of their leaflet on Kleefstra syndrome to populate some of the pages.
The leaflet can be downloaded from here under the Chromosome 9 section.
Kleefstra syndrome Facebook Group
Created by Isabel Jacinto Fonseca who is a parent of a child with Kleefstra syndrome, For Family, Friends, Genetic Research, Other Research and Development.
The Journal of Medical Genetics gives you free access to many very technical articles including those which reference 9q34.3 deletion. It is geared for health professionals and researchers in genetics, but it can be a fasinating read. You need to register on their site, but membership is free.
Chromosome Disorder Outreach, Inc. is a non-profit organization, founded, supported, and run by parents just like you and based in the US. Our children are affected by a wide range of chromosome disorders, including deletions, duplications, trisomies, inversions, translocations, and rings.
Easter Seals Disability Services
Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.
American Academy of Pediatrics Care Notebook
Provided by the American Academy of Pediatrics this allows you to build a notebook of your own and is designed to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes.
LEONA e.V. is a support group for families of children with rare chromosome disorders active in German-speaking countries. We accompany the families during pregnancy, in every day life and also when they have lost their child. We are focusing on connecting families as well as on the exchange of information and experiences between the affected families
