You may be asking yourself, what do I do now?
If your child has recently been diagnosed with INAD you may not even know where to begin. Chances are you’ve never heard about INAD or know what this means in terms of your child’s future. You’re probably feeling overwhelmed, shattered, scared, and possibly relief in finally receiving a diagnosis, a name, for the symptoms and changes that your child has been experiencing.
Many people find it helpful to start by learning as much as they can about INAD and getting answers to what is likely an infinite number of questions.
A great place to start is our website, where we do our best to post the most up to date information about INAD, research studies, clinical trials, and education and support opportunities that can help you as you adjust to raising a child with INAD.
Connect with other families. You are not alone in this journey.
We encourage you to connect with other families via our private online support group in Facebook. The forum is restricted to families, caregivers, and medical and scientific professionals who have direct connections with individuals who have been diagnosed with INAD. Families come together to connect, ask advice, and provide support for each other as navigate this rare disease.
To join the INAD Parent/Caregiver Facebook Support Group email: [email protected].
Join the INAD Contact Registry.
The purpose of the INAD Contact Registry is to make sure that we have the most current contact and demographic data for individuals who have been diagnosed with INAD and other forms of PLA2G6-related neurodegeneration (PLAN) and their families.
For more information on how we use this information, click here.
Learn about the PLANready Natural History Study and how you can help advance INAD research.
Please consider signing up for the INAD Natural History Study, called PLANready. This study collects data on the natural progression of the disease. Participants will be sent an electronic questionnaire every few months, that only takes approximately 20 minutes to complete.
You can learn more about the importance of participating in this study here.