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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

Abilities Without Boundaries (AWB)

Abilities Without Boundaries helps people achieve independence, self-sufficiency, community participation and personal satisfaction through employment and day support services.

Act Early Connecticut

Connecticut Act Early is a statewide outreach campaign that reaches out to families, communities, and organizations to promote early screening and early identification of potential developmental delays.

Advocacy for Children (AFCAMP)

You can become your child's best advocate by getting involved with their school community and getting to know the resources and programs that are available.

Amy’s Angels

Amy’s Angels is a grass roots organization that provides comprehensive short and long term assistance to individuals and their families dealing with the debilitating effects of serious illness or injury.

Ariana Rye Foundation

Ariana Rye Foundation is a non-profit organization dedicated to helping children with disabilities get medical equipment to foster their social, mental and physical development.

Autism Services and Resources Connecticut (ASRC)

We provide lifelong access to opportunities for persons on the autism spectrum with the goal of being fully-included and participating members of their communities.

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.

Camp Erin

Grief support for children who have lost a loved one

Camp Horizons

We create opportunities for people where they live, learn, work and play.

Camp Promise

A camp for children with muscular dystrophy and other neuromuscular disorders, focusing on both fun and medical support.

Camp Raise Your Hand

Camps for children with serious illnesses and disabilities

Camp Sunshine

This retreat supports children with life-threatening illnesses and their families, providing a range of activities and emotional support.

Chive Charities

Chive Charities is a 501(c)3 organization dedicated to supporting underserved veterans, military families, first responders, and rare medical diagnosees with life-changing grants.

Connecticut Tech Act Project

Provides a wide range of services to help individuals with disabilities and aging adult access Assistive Technology supports.

Disability Rights Connecticut, Inc. (“DRCT”)

Disability Rights Connecticut is a statewide non-profit organization with a mission to advocate for the human, civil, and legal rights of people with disabilities in Connecticut.

Enabling The Future

e-NABLE is an online global community of “Digital Humanitarian” volunteers from all over the world who are using their 3D printers to make free and low-cost prosthetic upper limb devices for children and adults in need.

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.

Joey's Friends Too

Our Mission is to assist in the purchase of medical equipment deemed necessary to promote independence and enhanced quality of life for children.

Kids Wish Network

Kids Wish Network is committed to infusing hope, creating happy memories, and improving the quality of life for children experiencing life-altering situations.

Magic Mobility Vans

Our Wheelchair Van Assistance Program helps needy families nationwide access handicap vans for their disabled family member.

Make-A-Wish Foundation

Grants wishes for children with critical illnesses, which can include financial assistance for related expenses.

Molly Ann Tango Memorial Foundation

The Molly Ann Tango Memorial Foundation’s main focus is providing assistance to families with children in Connecticut and Westchester County, NY. Please note that we do not provide reimbursements to families; we pay vendors directly.

National Alliance of Mental Health of Connecticut

NAMI Connecticut is part of the nation's largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.

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.

PATH Parent to Parent & Family Voices of CT

To connect and empower families, children, and youth living with disabilities or special healthcare needs through support, education, and advocacy.

Paul Newman's Hole in the Wall Gang Camp

Summer camp for children with serious illnesses

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.

Soul Friends

Through a partnership with The Cove, Soul Friends provides FREE Therapeutic Equine Sessions to grieving children (ages 8-17) & their families at various barns throughout Connecticut.

Spina Bifida Association of Connecticut

The mission of the Spina Bifida Association of New England is to build a better and brighter future for all those impacted by Spina Bifida.

Sunshine Foundation

Sunshine Foundation is a unique children’s charity, as it is the only national wish-granting organization that answers the dreams or wishes of children with life-long chronic illnesses or conditions, including level 3 severe autism and Down syndrome

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 Arc Connecticut

The Arc of Connecticut is an advocacy organization committed to protecting the rights of individuals with Intellectual and Developmental Disabilities (IDD) and promoting opportunities for their full inclusion in their communities.

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.

The Compassionate Friends

If you are a member (or a friend) of a family that has suffered the death of a child, The Compassionate Friends is here to help you and provide support for the family.

The Dream Factory

Grants wishes for children ages 3-18 with critical and chronic illnesses.

The Hole in the Wall Gang Camp

Founded by Paul Newman, this camp serves children with serious illnesses and their siblings, offering a range of recreational activities.

The Ronald McDonald House of Connecticut

Provides a supportive home environment and assistance for families with children receiving treatment at nearby hospitals

United Cerebral Palsy (UCP) of Eastern Connecticut

UCP’s programs for people with disabilities in Eastern Connecticut are designed to help increase independence at work, in school and at home.

Wheel It Forward

Lending library for people who need durable medical equipment (DME)

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.

Yale New Haven Health - Health at Home , Guilford

Home healthcare at Yale New Haven Health offers a wide range of services from personal and companion care to hospice care. Pediatric care is offered via this office

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