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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.

211 Hudsson Valley / ADK

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.

211 Hudsson Valley / ADK

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.

211 Hudsson Valley / ADK

Provides a six (6) week, evidence-based workshop for people living with ongoing or limiting health conditions or people who care for them. Participants learn self-management techniques and skills needed in day-to-day management of any type of ongoing health condition. Workshop topics include: • How to deal with frustration, fatigue, isolation, and pain • Maintaining a mind-body connection • Ways to maintain and improve strength, flexibility, relaxation, and endurance • Managing & maintaining healthy eating habits • How to communicate more effectively with family, friends, and health professionals

Finger Lakes Region 211

Provides a six (6) week, evidence-based workshop for people living with ongoing or limiting health conditions or people who care for them. Participants learn self-management techniques and skills needed in day-to-day management of any type of ongoing health condition. Workshop topics include: • How to deal with frustration, fatigue, isolation, and pain • Maintaining a mind-body connection • Ways to maintain and improve strength, flexibility, relaxation, and endurance • Managing & maintaining healthy eating habits • How to communicate more effectively with family, friends, and health professionals

Finger Lakes Region 211

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.

211 Hudsson Valley / ADK

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.

211 Hudsson Valley / ADK

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.

211 Hudsson Valley / ADK