Learn more about the Resource Directory

Welcome to the St. Mary’s Healthcare System Resource Directory

This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.

The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.

What you'll find

After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.

To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.

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All Resources

  1. National Organization for Rare Diseases (NORD) rarediseases.org

    Helps people (all ages) with rare orphan diseases through information, programs of education, advocacy, research, and service.

    Contact Information

    203-744-0100                  800-999-6673

    Address

    55 Kenosia Avenue, Danbury, CT 06810

  2. Genetic Alliance geneticalliance.org

    An organization devoted to promoting optimum healthcare for people suffering from genetic disorders.  Network of 1000 disease-specific advocacy organizations.  Resources include online genetic testing database, provides information about support groups, clinical descriptions, treatments, research, insurance issues.

    Contact Information

    www.diseaseinfosearch.org

  3. Brain Injury Association of New York State (BIANYS) bianys.org

    Advocates on behalf of individuals with brain injuries and their families, and promotes prevention.  Provides education, advocacy, and community support services that lead to improved outcomes for children and adults with brain injuries and their families.  Provides a toll-free Family Help Line, chapters & support groups.

    Contact Information

    518-459-7911

    Family Help Line: 1-800-444-6443   or    1-800-228-8201

    Address

    10 Colvin Avenue, Albany, NY 12206

  4. CHHAYA Community Development Corporation (CHHAYA CDC) chhayacdc.org

    Wide range of free services (i.e. housing, legal) for immigrants from India, Bangladesh, Pakistan, and Caribbean nations such as Guyana and Trinidad.  All services are offered in Bangla/Bengali, English, Hindi, and Urdu. Do not have to be documented immigrant to receive services.

    Contact Information

    718-478-3848

    Address

    37-44 77th Street, 2nd floor, Jackson Heights, NY 11372

  5. Healing the Children htcne.org

    A non-profit, non-partisan, volunteer organization, whose purpose is to help children throughout the world receive medical care unavailable to them due to a lack of medical and financial resources or health insurance. The Domestic Kids Program provides medical treatment and assistance to children in our local communities who are unable to get these services due to a lack of financial resources or medical insurance. They have arranged for children to receive services such as dental, medical, and surgical care, medical equipment, prescription medications, medical equipment, physical therapy, speech therapy, etc.

    Contact Information

    860-355-1828

    Address

    PO Box 129, 219 Kent Road, New Milford, CT, 06776

  6. Gift of Life, Inc. giftoflifeinc.com

    Facilitates free medical services, including cardiac surgery, to children suffering from heart disease who otherwise lack access to such services.

    Contact Information

    516-504-0830

    Address

    475 Northern Blvd., suite 22, Great Neck, NY 11021

  7. Disabled Children’s Relief Fund dcrf.com

    The Disabled Children’s Relief Fund is a non-profit organization that provides small grants to parents of disabled children and other organizations who provide services for disabled children. Grants are to be used for education, services and equipment to help improve the quality of life of a disabled child.

    Eligible parents of children with cerebral palsy, muscular dystrophy, spastic quadriplegia, encephalitis, rheumatoid arthritis, spina bifida, Down’s Syndrome, and other disabilities are eligible to receive assistance.

     

    Contact Information

    516-377-1605

    Address

    PO Box 89, Freeport, NY 11520

  8. Angelwish.Inc angelwish.org

    Angelwish.org was created in 1999 with the mission to provide the public with an easy way to grant wishes to the millions of children that are living with chronic illnesses around the world.

    Contact Information

    201-672-0722

    info@angelwish.org

    Address

    P.O. Box 186 Rutherford NJ 07070

  9. Cherished Creations cherishedcreations.com

    Cherished Creations, Inc. is a 501-C-3 Non-Profit Corporation whose mission is to enrich and empower the lives of seriously-ill children and the underprivileged, giving them hope for a brighter tomorrow.

    Contact Information

    908 790 0616

    Address

    343 Snyder Avenue Berkeley Heights , NJ, 07922

  10. Children’s Wish Foundation International childrenswish.org

    Children’s Wish Foundation International, Inc. is a non-profit wish granting organization founded on the premise that seriously ill children regardless of race, color creed, religion, or economic status, are not able to experience a normal, carefree childhood .

    Contact Information

    1-800-323-9474
    770-393-9474

    Address

    8615 Roswell Road Atlanta , GA 30350