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Dedicated to improving the quality of life of children with cancer and to provide comfort and support to the families. Services include recreational and wish granting for patient and siblings, financial aid and support to the parents and disseminating information to the general public about children suffering from cancer. Operates in Steven and Alexandra Cohen Children's Medical Center of New York, Winthrop, Columbia, Montefiore, Nassau University Medical Center and other area hospitals.

Categories

Families / Friends of People With Chronic Illnesses
Cancer
Siblings
Families and Individuals Needing Support
Children
Families / Friends of People With Terminal Illnesses
Volunteer Opportunities
Families / Friends of People With Cancer
Acts as a clearinghouse and referral service for information on rare diseases. Maintains a comprehensive rare disease database, which provides families with information on over 1,100 rare disorders. Its networking program links families with other families who are afflicted with similar disorders. Accumulates and disseminates information about orphan drugs and devices, making known their availability. Advocates the needs of people with rare disorders. Provides disease specific medical reports written in lay language. Also offers a Medication Assistance Program for specific drugs and a medical equipment exchange program. Publishes Orphan Disease Update and Resource Guide . Call for more information.

Categories

Families / Friends of People With Chronic Illnesses
Genetic Disorders
Children and Youth With Disabilities / Health Conditions
Information Clearinghouses
Health Related Advocacy Groups
Mitochondrial Diseases
Specialized Information and Referral
Orphan Diseases
Volunteer Opportunities
A volunteer movement to promote awareness within communities of the benefits of heart and lung surgical and medical procedures offered at Deborah Heart and Lung Center in Browns Mills, N.J. Newsletter, Educational Material, Agency Brochure.

Categories

Information and Referral
Advocacy
Public Awareness / Education
Charities / Grantmaking Organizations
Heart Disease
Specialized Information and Referral
Families / Friends of People With Chronic Illnesses
Maintains national network of well spouses (husbands and wives of chronically ill persons). Offers referrals to well spouse Support Groups. Has a Newsletter, Yearly Conference, online peer Mentorship Program, Round Robin Letter Writing group, and Respite Weekends. Advocates for programs that help families deal with chronic illness and educates healthcare professionals and the general public about the special challenges and unique roles well spouses face every day. Local group meets in Albertson, LI (Searingtown Rd., and IU Willets Road) at the Rehabilitation Center.

Categories

Families / Friends of People With Terminal Illnesses
Volunteer Opportunities
Support Groups
Caregivers
Health / Disability Related Support Groups
Families / Friends of People With Chronic Illnesses
Advocacy
Offers pediatric support groups including: Hope for Hearts, a support group for parents and siblings of children with congenital heart defects Our Little Heroes/Oncology Parent Support Network, offering mutual support and guidance for families of children with cancer. Call for schedule/information.

Categories

Congenital Conditions / Anomalies
Talklines / Warmlines
Health / Disability Related Counseling
Parents of People With Disabilities
Hospitals
Siblings of People With Disabilities
Heart Disease
Support Groups
Anemia
Special Collections and Archives
Medical Oncology
Cancer
Pediatric Cardiology
Families / Friends of People With Chronic Illnesses
Parenting / Family Support Groups
Parent to Parent Networking
Pediatrics
Pediatric Hematology / Oncology
Offers a year round camp for children with life threatening illnesses and their families to help alleviate the strain, provide fun experiences, and allow them to meet other families facing similar challenges.

Categories

Special Interest Camps
Children
Camps
Youth
Families / Friends of People With Terminal Illnesses
Volunteer Opportunities
Therapeutic Camps
Families / Friends of People With Chronic Illnesses