You are not alone! Newly diagnosed patients and family members can access NORD (the National Organization of Rare Disorders) website and video for newly diagnosed rare disease patients.
Gould Syndrome Foundation (COL4A1/COL4A2) DRUG AVOIDANCE LIST
AVOID Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) Please print and keep a copy of
this page in your medical file. Be sure to tell all treating Physicians, Surgeons, Dentists, Medical
Team, Comprehensive Care (Therapy teams) and Patient Advocate of the NSAID Avoidance
with Gould Syndrome COL4A1/A2. Please visit the page for the complete list and a downloadable document you can print and keep with you.
Learn the signs and symptpms of stroke in children. Utilize this video to help educate the family, caregivers, teachers and anyone involved with direct care of your child.
Infantile Spasms Project Website and Video
"Infantile spasms, also called "epileptic spasms" or West Syndrome, is a type of epilepsy that tends to affect infants under the age of 2 years, and is characterized by clusters of peculiar seizures. These seizures—termed spasms—are involuntary and usually consist of a brief interruption of behavior, often with lifting and extension of the arms and bending forward at the waist. In many cases, this behavior is accompanied by a rapid and forceful drop of the head. Each cluster typically lasts a few minutes. There are many variations of this pattern. After individual spasms, children often cry. Clusters of spasms most often occur upon awakening, but can happen at any time of the day." Find out more info on their educational website. Not all children who have Gould Syndrome have IS/West Syndrome but many do.
Signs and Symptoms of Seizures in Children
PALS (Patient Airlift Services)
PALS has a team of volunteer pilots, as well as our corporate and commercial partners, enable them to provide families in need with comprehensive door-to-door transportation assistance, including both free air and ground transportation. More importantly, there is no limit to the amount of times a family can fly with them. https://palservices.force.com/form/s/patient
Angel Flight East will fly families affected with Gould Syndrome and other rare diseases to medical facilities or treatments. AFE’s footprint is from Virginia-Ohio-Maine and for destinations beyond that, we link up with other volunteer pilot organizations.
Angel Flight West is a nonprofit, volunteer-driven organization that arranges free, non-emergency air travel for children and adults with serious medical conditions and other compelling needs. Our network of 1,400+ pilots throughout the 13 western states donate their aircraft, piloting skills, and all flying costs to help families in need, enabling them to receive vital treatment that might otherwise be inaccessible because of financial, medical, or geographic limitations.
United Healthcare Children’s Foundation
United Healthcare Children’s Foundation will provide a medical grant for numerous needs for families. There are requirements and restrictions but you can apply online. The Gould Syndrome Foundation can help you make the application free of charge if you need help filling out the forms.
The Healthwell Foundation provides grants when insurance isn’t enough for children with medical disorder and rare disease treatments. The Gould Syndrome Foundation can help you make the application free of charge if you need help filling out the forms.
The Redtree House 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. The Gould Syndrome Foundation can help you make the application free of charge if you need help filling out the forms.
Aubrey Rose Foundation, provides medical grants for families whose children have complex medical disease and disabilities. Please see fact list for application requirements and restrictions. The Gould Syndrome Foundation can help you make the application free of charge if you need help filling out the forms.
Nonprofits experienced with sub-diagnosis' of Gould 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.
Pediatric Stroke Warrior is a site that supports families post stroke, with information and education they have many resources available.
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.
International Children’s Anophthalmia Network
Parent/Caregiver Disability Advocacy Resource
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.