Health Related Advocacy Groups

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    The structure of the services index and definitions of the terms contained herein were originally published in A Taxonomy of Human Services: A Conceptual Framework with Standardized Terminology and Definitions for the Field by the Information and Referral Federation of Los Angeles County, Inc., 3035 Tyler Ave., El Monte, CA 91731; Copyright (c) 1983, 1987, 1991. No part of this listing of human services terms and definitions may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electrical, mechanical, photocopying, recording or otherwise without the prior written permission of the Information and Referral Federation of Los Angeles County, Inc.

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    Taxonomy Code: TD-1600.2570

    Organizations that are dedicated to protecting and improving the quality and affordability of health and long term care for all individuals and advocating for changes in the health care system that will achieve these goals; or which advocate more broadly for legislation and other measures such as bans on smoking that have a positive impact on public health. Specific issues may include extending the reach of childhood immunization programs, expanding services for people with specific disabilities or health conditions, funding medical research, supporting or opposing stem cell research, establishing the liability of managed health care organizations and nursing facilities for the consequences of their decisions, providing a prescription drug benefit for the elderly, passing a powerful patient's bill of rights, advocating for universal health care or taking a position on the merits of specific medical procedures or forms of treatment.

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    There are 14 matching records.
    Service NameDescriptionLocationProgramAgency
    Advisory/Advocacy ServicesEmpower individuals and families so that they can make the right decisions concerning issues effecting their life by connecting and accompanying individuals to service providers. They offer one-on-one mutual support, benefits advice, wellness recovery action planning, enabling individuals to make informed decisions on their own, assists in finding community resources. Help in understanding information regarding "State Education Laws, mental health laws, and school district policies to be sure that families are being treated in accordance with the law and/or policy. FranklinADVOCACY PROGRAMCOMMUNITY CONNECTIONS OF FRANKLIN COUNTY
    Advisory/Advocacy ServicesCare Coordination provides services through regional Health Home, Hudson River Health Care, a group of health and community providers working together to provide support for Medicaid members with their physical and/or mental health challenges by overseeing each member's care with focus on health promotion.ColumbiaCARE COORDINATIONMENTAL HEALTH ASSOCIATION OF COLUMBIA-GREENE COUNTIES
    Advocacy ServicesAdvocacy for people with disabilities in several areas.OrangeADVOCACY SERVICESINDEPENDENT LIVING
    Advocacy ServicesAdvocates for increased funding for breast cancer research, adequate insurance coverage for patients, quality control of treatment, environmental concerns and improved access to proper care.BREAST CANCER ADVOCACYADELPHI NY STATEWIDE BREAST CANCER HOTLINE AND SUPPORT PROGRAM
    COMMUNITY HEALTH SERVICES EDUCATION AND SUPPORT FOR PATIENT SAFETYOffers community health education and workshops related to patient safety and advocacy. Call for more information.NassauCOMMUNITY HEALTH SERVICES EDUCATION AND SUPPORT FOR PATIENT SAFETYPULSE OF NEW YORK, INC.
    Computer ServicesServices/Support via website to all health care patients with conditions of Alzheimers, epilepsy, stroke, brain trauma, mental illnesses, etc in building websites to share health updates, receive messages of encouragement and coordinate everyday help.SERVICE SUPPORT VIA WEBSITECARING BRIDGE
    FAMILY SUPPORT PROGRAMOffers individualized case management provided by a team of experienced and compassionate social workers, Child-Life specialists, art Therapists specialists for children with a life-threatening illness and their families. Services include emotional support, palliative/bereavement support, financial assistance, and advocacy support.SuffolkFAMILY SUPPORT PROGRAMFRIENDS OF KAREN, INC.
    HOME CARE ASSOCIATION OF NEW YORK STATE, INC.Seeks to promote and enhance the quality, accessibility, and availability of home care. Interfaces with state and federal lawmaking bodies, regulatory agencies, and fiscal intermediaries to interpret, challenge, or support regulations that affect home health care and services. Actively involved in influential councils, committees, and task forces. Membership totals over 500 agencies, organizations, and associate members. Website offers search capability to locate providers throughout New York State.HOME CARE ASSOCIATION OF NEW YORK STATE, INC.HOME CARE ASSOCIATION OF NEW YORK STATE, INC.
    HUMAN GROWTH FOUNDATIONDedicated to helping children and adults with disorders of growth and growth hormone through research, education, support, and advocacy.NassauHUMAN GROWTH FOUNDATIONHUMAN GROWTH FOUNDATION
    IPROProvides its expertise in the field of health care evaluation to government, commercial insurers, unions, and managed care organizations. Ipro is under contract with the Centers for Medicare & Medicaid Services, an agency of the U.S. Department of Health and Human Services, to improve the quality of health care for people with Medicare.NassauIPROIPRO
    Long Term Care InformationThis Medicaid long term community program assists with enrollments for the consumers and home health aids. Provides nursing home transition services for those individuals who want to return home by helping with setting up services in the home. Member of New York Connects Provider.ClintonCONSUMER DIRECTED PERSONAL ASSISTANCENORTH COUNTRY CENTER FOR INDEPENDENCE
    NATIONAL ORGANIZATION FOR RARE DISORDERSActs 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.NATIONAL ORGANIZATION FOR RARE DISORDERSNATIONAL ORGANIZATION FOR RARE DISORDERS
    THE EAST HAMPTON HEALTHCARE FOUNDATIONProvides improved access to quality healthcare services in the town of East Hampton. Offers primary healthcare to uninsured through programs at the East Hampton Healthcare Facility. Funds programs to support healthcare access and public health improvement. Provides grant funds to community organizations sponsoring healthcare activities.SuffolkTHE EAST HAMPTON HEALTHCARE FOUNDATIONTHE EAST HAMPTON HEALTHCARE FOUNDATION
    WALKABILITY PROGRAMPromotes the benefits of walking via "mock prescriptions" to encourage people to walk, coordinates with local towns and villages to make streets safer for walking, offers a database listing year-round walking events and trails, and provides and online portal for members to track their progress.SuffolkWALKABILITY PROGRAMLONG ISLAND HEALTH COLLABORATIVE

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