Newly Diagnosed
If you’ve recently received an Angelman syndrome diagnosis, we want you to know—you are not alone. While this news can feel overwhelming, it’s also the beginning of a journey filled with support, connection, and hope. The Angelman Syndrome Foundation is here to walk alongside you with resources, information, and a community that understands.
Our close-knit community is made up of people who truly get it—parents, caregivers, medical professionals, and advocates who are all working together to make life better for individuals with Angelman syndrome. We invite you to explore, ask questions, and lean on us for help. Whether you’re looking for medical guidance, educational tools, or just someone who understands, we’re here for you.
Families sometimes don’t know where to turn or what to do once they’ve received a diagnosis. The good news is that you found the ASF! The ASF has been supporting families for over 30 years while funding the research that has made the biggest strides toward a cure for Angelman syndrome. We and our network of families are here for you.
Start with the steps below.
1
Fill out the Contact Registry.
We will add you to our email list and send you information about Angelman syndrome and ways the ASF can help you begin your journey.
Have a specific question and want to contact the ASF right away? Contact us at 800-432-6435 or info@angelman.org.
2
Download First 100 Days Checklist.
En Espanol: Primeros 100dA-as-de-viaje
This is a guide to navigating the first 100 days after an Angelman syndrome diagnosis. In checklist format, it provides steps you can take to help your child thrive and resources available to assist you along the way.
3
Register for an AS 101 Webinar.
Join other newly diagnosed parents and learn about Angelman syndrome, the research around it and supports that are available to help you through the journey.
AS 101 is held every few months on the 3rd Tuesday at 8:30pm EST.
4
Make sure your child’s medical records reflect their diagnosis.
The ICD-10 code for Angelman syndrome is Q93.51. This medical code is used by healthcare providers to document and track a diagnosis in medical records, insurance claims, and care plans.
Sharing this code with your clinical team helps ensure that your child’s diagnosis is accurately recognized, coordinated across specialists, and may support access to certain services or coverage.
5
Make a connection
A rare disease diagnosis can be isolating. Connect with others who understand.
ASF Family Champions are available to chat and share where they are in their journey.
See if there is an Angelman Strong event near you and visit our Events page for more.
Join the ASF Facebook group where Angelman families connect, ask questions, and support one another.
6
Find resources
Visit the Find Resources for Newly Diagnosed page, for a curated list of trusted services, helpful programs, and practical tools designed to support your family from the very beginning.
Let the Angelman Syndrome Foundation help you navigate this journey with hope, guidance, and community.
A message from Amanda Moore, CEO
With our son Jackson’s diagnosis of Angelman syndrome, my husband and I were overwhelmed. We had no idea where to start or how to process the news. It was not until a doctor told us to reach out to the Angleman Syndrome Foundation (ASF) that we truly started to find answers and hope.
Through the ASF, you will find a community of people who understand what you are going through. Whether it is connecting you to other families, educating you at an ASF Family Conference, or just listening, the ASF is here to provide you with whatever you need at any point of your journey.
I would love to hear from you and support you in any way that I can. You can reach me at amoore@angelman.org. I am honored to serve this community and look forward to meeting you at an Angelman Strong event or the ASF Family Conference!