As a parent of a child with a structural brain disorder, you have the power and the right to seek the best in care, diagnosis, and treatment. Many parents turn to relevant parent support groups, which can be identified once a specific diagnosis is made by your child's physician.
For our study, we receive many inquiries from parents, and we directly enroll patients into our study, usually with their physician's involvement. Parents can contact us directly at
firstname.lastname@example.org, call our study coordinator at 858-246-0547 or go to the
Gleeson Lab, to obtain necessary information on sending copies of brain MRIs, photos of your child, questionnaires, and instructions on shipping biological samples for study.
You are not alone
If you are the parent of a child with a structural brain disorder, you are not alone. There are many support groups for individual disorders, so the first step is to identify the support group appropriate for your child, and connect with the parent coordinator. This can serve several useful functions, as the coordinators typically have many years of experience, not just with their own child, but also helping other parents navigate through the complex web of seeking the best specialist to evaluate your child, arranging special services, determining the best course of action and any medication.
Patient Advocacy Groups in the United States
Provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
National Organization for Rare Disorders (NORD)
A federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.
The Global Genes Project
The Global Genes Project will create greater public awareness for rare disease while connecting, educating, and empowering the millions of families and caregivers affected through an online community and collaborative portal.