Whether newly diagnosed or living the daily life of a family affected by dup15q syndrome and just now reaching out, you are not alone!
With the diagnosis of dup15q syndrome parents usually feel overwhelmed, and many other emotions. With the Dup15q Alliance, you are joining a community of people who understand what you are going through, whatever stage you are in and are here to help. Registering as a member of the Dup15q Alliance gives you full access to all of the resources that the Alliance offers. As part of this registration we ask some contact info as well as some background questions. We do not share this information with anyone and it is important that you fill out the form completely.
After registering, if you like you will be put in touch with a Regional Representative who help mentor new Dup15q Alliance families that need some guidance navigating their new diagnosis. Many families find it helpful to talk to someone who can answer some of your questions first hand and offer you support. Please check out the Regional Representative section on the website, email firstname.lastname@example.org or call 1-855-dup-15qa.
Our Dup15q Alliance Facebook groups (Dup15q Alliance and Dup15q Alliance Parent Support) have provided a lifeline for so many of our families.
Since our members are all over the world, 24-hours a day, 7-days a week someone is there for you to ask your questions, to support you and to help you.
The main purpose of the Alliance is to create a community where families can ask questions, learn about dup15q syndrome, get involved and advocate for those affected by the syndrome. You can find past issues of our The Mirror (our newsletter), links to our different Facebook groups, dup15q syndrome clinic information (these are clinics that are staffed by clinicians who are at the forefront of treatments and research), updates on the basic research being done with dup15q syndrome as well as out Dup15q Alliance International partners. If there is something that you think we need to add to our site, we are always open to suggestions and feedback.
We strive to provide support for our dup15q syndrome community and I hope to meet you at one of our conferences or regional gatherings. Please do not hesitate to call me at 1-855-dup-15qa or email me at email@example.com. I would love to hear from you. We hope that in the Dup15q Alliance you will find friendship, support, answers and hope.