CAGS Clinic at Boston Children’s Hospital

The World’s Leading Center for Chopra-Amiel-Gordon Syndrome (CAGS) Care

Trusted by the CAGS Foundation as the Global Hub for Expert Care

The Chopra-Amiel-Gordon Syndrome (CAGS) Foundation recognizes the CAGS Clinic at Boston Children’s Hospital as the world’s foremost center specializing in the evaluation and care of individuals with CAGS. Families across the globe rely on this clinic for expert guidance, coordinated specialty care, and support informed by the latest research into ANKRD17-related CAGS.

Why Choose the CAGS Clinic?

World-Renowned Leadership: Dr. Maya Chopra

The clinic is led by Dr. Maya Chopra, one of the world’s leading experts on ANKRD17 and the clinical spectrum of CAGS. Her work has shaped much of the global understanding of this rare genetic condition.

Her CAGS Clinic team includes dedicated specialists in:

• Genetics & genetic counseling

• Neurology & seizure management

• Immunology

• Nephrology (kidney care)

Upon request, the CAGS Clinic team may also be able to coordinate appointments with:

• Ophthalmology and vision care

• Developmental & behavioral pediatrics

• Therapies (speech, OT, PT)

This collaborative, multidisciplinary approach ensures that each individual with CAGS receives comprehensive, coordinated care tailored to their unique needs.

Grounded in Leading Research

Boston Children’s Hospital is home to the researchers who first described CAGS and continue to advance global understanding of ANKRD17.
Patients seen in the clinic may also be connected to:

• Natural history efforts

• Research studies

• Emerging clinical insights

This connection to scientific discovery ensures families remain informed and supported as knowledge of CAGS evolves.

Who Should Visit the CAGS Clinic?

Families may benefit from an evaluation at the CAGS Clinic if their child or loved one:

• Has a confirmed ANKRD17 variant

• Is newly diagnosed and needs a baseline evaluation

• Experiences seizures, developmental delays, immune issues, kidney findings, or other features associated with CAGS

• Needs coordinated long-term follow-up across specialties

• Is seeking a second opinion from experts who specialize in CAGS

The clinic welcomes patients from the United States and around the world.

About Your Visit & Support

• The clinics are held once monthly, typically on Thursdays/Fridays toward the end of the month.

• Those coming to clinic will start the process with an intake call with Abigail Sveden or Brynn Heslin. The call will be used to collect insurance information, review medical history or updates, determine priorities for clinic, and work on scheduling appointments.

• There is a wonderful resource through the Hospital, the Hale Family Center for Families, which can provide support to families in navigating accommodations and parking, as well as providing various other forms of support.

  • Contact information for Hale Family Center for Families
    Telephone: +1 617-355-6279
    Fax: +1 617-730-1949
    Email: center.families@childrens.harvard.edu

How to Make an Appointment

Appointments can be made directly through Boston Children’s Hospital.

To request an appointment:

• Visit: Boston Children’s CAGS Clinic page

• Call: +1 617-919-5214

• International families: Boston Children’s Global Services can assist with travel, scheduling, and support needs.

The CAGS Foundation strongly encourages families to connect with this expert team whenever possible.

Our Role as the CAGS Foundation

The clinic is not operated by the CAGS Foundation, but we actively support awareness, education, and research efforts that benefit families seen there. Our goal is to ensure every family affected by CAGS has access to the best possible care — and that begins with trusted experts at the CAGS Clinic. We encourage all families affected by CAGS to consider establishing care or seeking consultation with Dr. Maya Chopra and the global CAGS team at Boston Children’s Hospital.

You Are Not Alone

Receiving a rare diagnosis can feel overwhelming - but compassionate, world-leading care is available.
The CAGS Clinic provides families with clarity, expertise, and long-term support from clinicians who understand CAGS at the deepest level.

CAGS Clinic Offices

2 Brookline Place
Brookline, MA 02445 USA

Contacts
+1 617-919-5214
Abigail.sveden@childrens.harvard.edu

Accommodations

300 Longwood Ave.
Boston, MA 02115 USA

Contacts
+1 617-919-5214
Abigail.sveden@childrens.harvard.edu

Accommodations