Parent Resources
Identifying resources to support rare disease children and their families is too time consuming. This section is dedicated to streamlining this process.
Do you know of a resource that can support families? Please submit them thorough this form and we will be sure to review and add them.
Number of resources found:
43
B Brave Foundation
B Brave Foundation provides customized grants tailored to each family and their individual journey. The funding is designed to ease financial stress on families and can cover a range of needs, including bills, medical expenses, lodging during hospital stays, funeral expenses and more.
Family Advocacy for Children’s Mental Health
FAVOR’s philosophy exemplifies our key core values: family empowerment, mutual respect, accountability, and partnership. We use a wraparound approach that emphasizes the importance of the family and youth voice for achieving successful outcomes for children.
National Organization for Rare Disorders
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
New England Assistive Technology (NEAT) Marketplace
At The NEAT Center at Oak Hill, we offer the latest technologies, products, equipment and services that assist people with day-to-day activities that they have trouble doing themselves, either because of a learning difference, disability or the effects of aging.
Oracle Health Foundation
Oracle Health Foundation provides pediatric grants that cover a wide variety of clinical, equipment, travel and lodging, and vehicle modification costs related to children’s healthcare needs. Please review the following information for more details on the specific types of covered expenses as well as eligibility requirements to apply for grants.
Regional Hospice
Nonprofit organization that has been providing individualized, compassionate hospice care since 1983. Their highly-skilled, interdisciplinary team of physicians, nurses, hospice aides, social workers, chaplains, bereavement counselors and hospice-trained volunteers care for patients and their loved ones in their homes, assisted living and nursing facilities, at our residential Center for Comfort Care & Healing in Danbury, CT and in dedicated, private hospice suites at Danbury, New Milford and Norwalk Hospitals.
Syd’s Book Shack & Boutique INC
The Syd’s Book Shack & Boutique INC’s Assistive Technology Assistance Program assists Southern New England citizens with disabilities to obtain the assistive technology they need to enhance independence and productivity in the community, education and employment with an improved quality of life.
The COVE Center For Grieving Children
At The Cove Center for Grieving Children, our mission is to provide hope and healing for grieving children, teens and their families, as well as training for the professionals who work with them.
We provide family and school-based programs utilizing the peer support group concept for helping children, teens and families work through their unresolved grief due to the death of someone significant in their lives.
Wheelchairs 4 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.