Resources for Patients & Caregivers
This resource guide is designed to support individuals and families affected by Gould Syndrome by organizing accessible, beginner-friendly tools and information across key areas of life. While not every resource will apply to all individuals—since Gould Syndrome presents differently from person to person—these links offer a helpful starting point for navigating medical, educational, and developmental needs. Click the arrow to access information for each category.
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Resources
Helpful Videos
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Resources
United Healthcare Children’s Foundation: Provides medical grants for numerous needs for families. There are requirements and restrictions but you can apply online.
The Healthwell Foundation: Provides grants when insurance isn’t enough for children with medical disorder and rare disease treatments.
Ronald McDonald House Resources: Provides grants for families with children with complex medical need and disabilities. It also has a large resource list of other nonprofit grants for families to utilize.
*In addition to these grant opportunities, there are also many available at the State level as well. See our resources in the section below this or refer to your care team for exact grants available in your area. This link may serve as a starting point for further assistance.
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Medicaid Waivers, Katie Beckett programs, and other Medicaid programs.
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Resources
Helpful Videos
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Alport Syndrome: Alport syndrome is a rare kidney disease that is genetically passed down in families from parents to children, though sometimes it can occur spontaneously and you might be the first one in your family to have it. While it would be extremely rare to have this in addition to Gould Syndrome, it is a Collagen VI issue and related to the kidneys. It is an excellent resource to have for rare disease kidney support
(Chasa) - Children with Hemiplegia and Stroke Association: Chasa, is the Children with Hemiplegia and Stroke Association. While not all cases of Gould Syndrome have stroke, many do and this website and Association has a plethora of great information for newly diagnosed cases of stroke, management and resources available.
Brain Recovery Project: Brain Recovery Project, is a site supporting post surgical interventions for intractable and drug resistant epilepsy, including a free webinar on IEP’s after brain surgery.
The American Council for the Blind: The American Council for the Blind is a resource dedicated to helping promote independence but also has resources and supports for visual impairments and equipment.
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Courageous Parent Network: Has information and related resources for parents, such as when receiving a diagnosis, prenatal diagnosis and when there is no diagnosis.
Virtual Support Group for Parents of Children with Disabilities
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Seizure action plan templates: https://seizureactionplans.org/sap-examples/
Back to school checklist: https://seizureactionplans.org/virtual-backpack/
patient to patient recommendations
Our patient-to-patient clinician map is now live! Use it to find doctors and specialists who have directly cared for someone with COL4A1/A2, wherever you are located. Has an excellent clinician treated you or your loved one? [Recommend them here] so other families can find them too!
(Please note: These are community recommendations, not Foundation-approved referrals.)
Looking for a clinic or center with Gould Syndrome experience, in the US or internationally? [Contact us] and we’ll help point you in the right direction.
