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Patient Support Organizations - General
Association of Blind Citizens (ABC)
Guiding Eyes for the Blind
National Alliance for Caregiving
National Association for Parents of Children with Visual Impairments
Patients Like Me
Ronald McDonald House Charities
Social Security and Disability Resource Center
Starlight Children's Foundation
Zichron Shlome Refuah
The purpose of the Association of Blind Citizens is to advance relevant causes, increase opportunities in education, employment, cultural, recreational and other life activities, as well as enhance the social, political, and economic well-being for all persons who are blind or visually impaired. ABC offers publications, informative meetings, and a special radio show, as well as education, employment, and cultural opportunities to promote full inclusion in society.
Camp Kesem is a free one-week overnight summer camp for kids with a parent who has (or has had) cancer. The camps are run by college students and are primarily for kids ages 6-13, with a few teen programs for campers ages 14-16. The camper to counselor ratio is 2:1. 925-212-9044 or 925-550-5698 (Responds to calls in English only)
To keep family and friends updated during a health challenge, CarePages provides free patient blog websites. These personalized websites can include stories, updates, photos, and messages of support from family and friends. Access to each blog is controlled by the creator to ensure privacy.
Further enhancing the patient support community, CarePages also provides a resource center where you can find inspirational stories, tips for self-care and care giving, and information on health conditions. Discussion forums offer an opportunity to share with others who are experiencing similar health or care giving challenges.
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. Powered by generous donors, CaringBridge websites offer a personal and private space to communicate and show support, saving time and emotional energy when health matters most.
Their mission is to restore the light of childhood to children whose innocence ended when life-threatening or lifelong illness was diagnosed. Through programs that address the emotional, social, and financial needs of seriously ill children, their families, and communities, Chai Lifeline restores normalcy to family life, and better enables families to withstand the crises and challenges of serious pediatric illness.
Daily Strength is an online support group hub, with links to more than 500 groups and forums. This community of more than 5,700 members includes groups on many eye-related topics, including: dry eyes, blindness and visual impairment, keratoconus, cancers, chronic pain, shingles, scleroderma, and many more.
Guiding Eyes is an internationally accredited, nonprofit guide dog school providing the blind and visually impaired with superior Guiding Eyes dogs, training, and lifetime support services. Over its 50-year history, Guiding Eyes has graduated more than 7,000 guide dog teams. This organization is committed to giving their students the gift of greater personal freedom, independence, and dignity by providing them with the finest bred and trained guide dogs in the world. Their services are fully funded through donations so there is no cost to students. Web site users can find information for prospective students, details about the organization’s programs, and success stories of graduates.
For more than 100 years, Lighthouse International has been leading the way in assisting people who are dealing with, or are at risk for, vision loss and blindness. They provide services, education, research, and advocacy to improve the lives of those with low vision and blindness. Rehabilitation and career services, in addition to medical care, are a primary focus of their organization. Newsletter signup is available from their home page.
The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The offer a number of resources for caregivers, including links to other helpful websites.
The National Association for Parents of Children with Visual Impairments (NAPVI) is a non-profit organization of, by and for parents committed to providing support to the parents of children who have visual impairments. NAPVI is dedicated to giving emotional support, initiating outreach programs, networking and advocating for the educational needs and welfare of children who are blind or visually impaired. Services offered on their website include:
- Family Connect, an online multimedia community for parents and guardians of children with visual impairments.
- A national support and information network through phone and mail correspondence
They also have a Massachusetts chapter, which organizes local, fun events for the whole family.
Patients Like Me is a website with more than 220,000 members dedicated to putting patients first. They do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions. On their website you can:
- Read about patient like you – filter results by age, gender, treatment, symptoms and/or condition
- Explore reports on various treatments, including prescription medications, over the counter medications and supplements
- Learn about symptoms – severity, treatments taken, and what patients have to say about their experiences
- Search by condition – enter your condition for reports, therapies, patient stories and more
The mission of Ronald McDonald House Charities is to create, find and support programs that directly improve the health and wellbeing of children.
The Social Security Disability Resource Center provides information on the federal disability benefit programs, SSD (social security disability, mandated under title II of the social security act) and SSI (supplemental security income, mandated under title 16), in addition to answering questions about social security retirement benefits and providing resource links on topics such as medicare.
Starlight Children's Foundation helps seriously ill children and their families cope through entertainment, education, and family activities. Starlight builds playrooms and teen lounges in hospitals, and provides PC Pals and Fun Centers for kids to connect with friends online. Starbright World is an online social network where teens who have serious medical conditions, and their siblings, can connect with each other. 310-479-1212 or 800-315-2580 (Responds to calls in English and Spanish)
With a mission to enable people to understand the real life experiences of other patients, Treato identifies, analyzes, and understands information from patient discussions, inviting visitors to search this data to explore thousands of drugs and medical conditions. The information is organized by condition and medication.
Zichron Shlome Refuah (ZSRF) is a non-profit organization whose mission is to assist patients and their families who are undergoing the ravages of a cancer illness. ZSRF provides support for the financial, emotional and practical needs of patients and their families, including covering travel expenses for medical help, rent, utilities, or housekeepers.