While Angelman syndrome has been a known and identifiable rare disease since the 1980s, it’s still considered to be a relatively new disorder. It’s not always familiar to most physicians. ASF Clinics are designed to provide individuals with Angelman syndrome with the comprehensive medical care needed—all available in one clinical visit in one single location. You no longer have to search for multiple clinics and multiple specialists to receive the necessary care.
“Emily went from only taking a couple steps to walking all over the clinic and our house! She hasn’t had a seizure since November 2021. It is a dream come true!” — Waibel Family
“Mason was having problems eating and was not gaining weight. The G.I. specialist and dietitian at the ASF Clinic were able to get Mason eating, giving him the proper nutrition he needed.” — Mastrocola Family
ASF Clinics give patients unprecedented access to the highest quality, evidence-based medical care, customized to their needs. Visit one of our worldwide locations.
Through its global network of patient-powered data, ASF Clinics are improving quality of life, empowering families and transforming the future of AS care—all while paving the way for the ultimate goal: The cure.
We believe access to specialized, high-quality health care is essential for individuals with AS to thrive. Therefore, anyone with an Angelman syndrome diagnosis is invited to visit an ASF Clinic.
Each ASF Clinic is multidisciplinary, yet each has its own unique capabilities. Individuals have access to a variety of professionals, including but not limited to Clinical Geneticists, Neurologists, Psychiatrists, Psychologists, Speech Language Pathologists, Physical/Occupational Therapists, Genetic Counselors, Social Workers and Nutritionists.
By partnering with leading medical and research institutions across the country, we founded ASF Clinics to provide individuals with AS, from birth through adulthood, the comprehensive medical care they need throughout their lifetime. Each clinic offers specialized care and expertise that families and individuals can take back to their team at home.
To schedule an appointment:
From the map on this page, choose which clinic you’d like to attend. Each clinic has specific contact information for its location listed. If you need help selecting which ASF Clinic is best for your loved one at this time, or if you need assistance making an appointment, we’re happy to assist you. Please contact Shari Welch at swelch@angelman.org.
Yes! Each ASF Clinic accepts a variety of insurance plans and policies. When you call to get information about scheduling an appointment, be sure to discuss insurance plans and options. ASF never wants finances to stand in the way of getting the care you need, so please reach out to us if financial hardship is a barrier to visiting an ASF Clinic. We can provide options to assist you.
Clinical trials are a type of research designed to answer specific medical questions such as, is this treatment safe for patients or how well does the treatment work? The research follows a very specific process and involves testing the new drugs, medicines, or devices on real people. If you’re interested in participating, you can find the trial and contact information on the clinic location pages (not all clinics participate in all trials). You may also visit the Research Studies page, to find clinical trails and see the list of participating locations. You may also review the Frequently Asked Questions about Angelman Clinical Trials. Â
We know your first visit to a new ASF Clinic can be overwhelming. We want you to have the best possible experience and for you to maximize ALL the benefits ASF Clinics have to offer. Please review the Angelman Syndrome Initial Clinic Checklist for more information on how to properly prepare for your first visit, including what documents you need to have prepared.
ASF Clinics welcome any clinician with experience treating Angelman syndrome to join our network, which is the only comprehensive group of medical professionals in the world specializing in AS. If you’re interested in joining more than 40 providers worldwide, please contact Shari Welch at swelch@angelman.org.Â
While Angelman and dup15q syndromes are different, the same set of medical providers often care for both populations of individuals, as both syndromes affect the q-arm of the 15th chromosome. The combination of data collection methods and cross-disorder investigation is key to driving discovery.
Emily had her first seizure at a year old. Before visiting the ASF Clinic at Children’s Hospital Colorado, she was having multiple seizures in a 24-hour period once a month. At the ASF Clinic, Emily saw a team of doctors, therapists and other specialists who focus on caring for kids with AS.
They gave Emily a new seizure medication and developed a care plan to reduce her seizures and aid her development. Emily went from only taking a couple steps to walking all over the clinic and our house! Her seizures were controlled and it is a dream come true!
Emily will continue to see ASF clinicians twice a year to ensure she’s developing well.
Mason was having problems eating and was not gaining weight. His doctor at home felt that a feeding tube was the only answer. They knew this was a last resort procedure that was not without risks, so they decided to have Mason seen at an ASF Clinic. The team of doctors at the AS clinic found that a feeding tube was not necessary and came up with a plan to help Mason.
Working with the clinic’s G.I. specialist and dietitian, they were able to get Mason eating, giving him the proper nutrition he needed without a surgical procedure.
Today, Mason is thriving and the Mastrocola’s are thrilled with his progress and feel confident that they can get the support they need.
The mission of Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.