The best support sites for families with a diagnosis of 2q23.1 Microdeletion/duplication Syndrome is our Facebook 2q23.1 MDS Support Group. Please go to https://www.facebook.com/groups/260449943985091/ to request to be added to this closed group.
You can also follow events and news on our 2q23.1 MDS Community Page https://www.facebook.com/2q23.1
Aware of Angels AOA advocates for children who have genetic, rare or undiagnosed disorders. AOA assists children needing a diagnosis and research opportunities. We are raising awareness, promoting research and connecting families in similar situations. By sharing their stories and images, we hope to bring awareness to the medical and research fields. http://awareofangels.org/
Lemonade Lifestyle This is a Blog created by a mother. Follow her journey in “raising one very typical little boy and one extra ordinary little girl” http://www.lemonadelifestyle.com/
Chromosome Disorder Outreach This support site is specifically for rare chromosomal disorders. It is a non-profit organization, that is funded, supported, and run by parents. Although it is not specific to 2q23.1 deletion/duplication disorders, the other site members will be able to relate to the rarity of a condition, and the need for additional research and resources http://www.chromodisorder.org/CDO//
Unique Unique is another Rare Chromosome Disorder Support Group that is available for additional online support. http://www.rarechromo.org/html/home.asp
2q23.1 Microdeletion (2q231) on Twitter: This newly created Twitter account is designed specifically to raise awareness for 2q23.1 (MBD5) deletion/duplication disorders. Tweet now. https://twitter.com/2q231
Online Registry: Reg4All is a program created through the Genetic Alliance. Please check out the site for more information. https://www.reg4all.org
“Reg4ALL is an online health registry that’s free and open to everyone. Using fun and simple surveys (thanks to survey experts, Traitwise), users can register, store information about their health, and see how their answers compare with other users’. Next, they can selectively share that information in whatever manner they feel comfortable, and use Reg4All to connect with the disease advocacy community and other helpful resources. Finally, Reg4ALL aims to transform the way that medical research is done, and facilitate connections between researchers and potential participants – Reg4ALL is perfect for those who want to spark medical innovation and propel breakthroughs.”
http://www.onlinecolleges.net/for-students/students-with-disabilities/ a user-friendly guide that explores rights and protection provided by law, the many different education opportunities as well as in-depth grants and scholarship programs designed specifically to support higher education. We hope our guide will not only answer common questions, but make it easier for those living with disabilities to leverage the educational benefits they have earned.