Rare Resources
Browse our resource list below for information on different organizations that have resources for patients, families and more. More are being added every day, check back often or reach out if you are searching for a specific kind of help!
KBG Featured Organizations are groups or organizations that have personal connections to KBG Syndrome.
Corey's Farm
*KBG Featured Organization*
Corey's Farm is a smallholding which is being developed to provide support for children and their families facing emotional challenges.
The charity will offer therapeutic interventions by means of animal assisted therapy and nature based activities.
Every Link Matters
*KBG Featured Organization*
The charity was created to raise awareness and funds for children who have been diagnosed and their families who need help with medical and therapy expenses. Instead of using social media, they have decided to be the social media outlet and support for families like themselves who are on the KBG journey.
The Family Resource Center on Disabilities
Providing Parents of Children with Disabilities with Information, Training, and Assistance
Family Voices
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.
Make A Wish
Who is eligible?
Children must meet these criteria at the time of referral:
• Diagnosed with a critical illness, i.e., a progressive, degenerative or malignant condition that is placing the child's life in jeopardy
• Older than 2½ years and younger than 18
• Has not received a wish from another wish-granting organization
Kids Together
Information and Resources
For Inclusion of Children and Adults With Disabilities
In Classrooms and Communities
The Morgan Project
We work with families of children with lifelong disabilities to make their lives more rewarding and comfortable than they ever believed possible.
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We collaborate with other organizations in our community to provide therapeutic, multi-sensory activities to individuals with developmental differences. We connect families. We empower parents. We champion quality of life.
The Humanitarian Project
Dental Care for Children with Special Needs Bringing Special Smiles to Special Kids
Exceptional Parent Magazine
An online multi-media company dedicated to be the ultimate resource for everything related to the special needs community. Providing practical advice, emotional support, current trending news and educational information to empower caregivers and families of children and adults with disabilities and special healthcare needs. As well as to the physicians, allied health care professionals, and educational professionals who are involved in their care and development.
NORD RareCare
Midwest Special Needs Trust
Missouri Family Trust was established as a result of advocacy by parents and professionals who realized that many obstacles hinder planning for the financial future of individuals with disabilities.
Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Wheelchairs for Kids
Wheelchairs 4 Kids’ flagship program, Let’s Roll, is dedicated to fulfilling our primary mission: improving the lives of children with physical disabilities. Let’s Roll provides wheelchairs, home and vehicle modifications, as well as other therapeutic equipment to children that have limited mobility due to illness, accident or abuse.
Cerebral Palsy Guide
Cerebral Palsy Guide has compiled the most in-depth resources nationwide. Our mission is to assist families with disabilities caused by birth injuries, and provide them with extensive support resources.
