Patient Support Organizations
Patients Like Me
National Association for Parents of Children with Visual Impairments
Guiding Eyes for the Blind
Stevens Johnson Syndrome Foundation
National Keratoconus Foundation
Sjögren's Syndrome Foundation
The Dry Eye Zone
National Foundation for Ectodermal Dysplasias
International Scleroderma Network
Facial Pain Association
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.
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.
Patients Like Me is a website with more than 150,000 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
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.
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. NAVPI 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.
- An information and referral service
- Awareness, their award-winning quarterly newsletter
- 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.
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.
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.
The Stevens Johnson Syndrome Foundation provides support services to SJS patients, family and friends, and compiles and distributes information about SJS to the public and medical professionals regarding treatments and therapies beneficial to SJS sufferers.
In an effort to raise awareness -a major foundation activity- and treatment funds, the SJS Foundation has a history of hosting a variety of events (benefit walks, concerts, etc.) and lobbying states to proclaim August to be SJS Awareness month.
Supports and information available through this site include:
- A yahoo-based SJS/TENS discussion group in which over 200 members offer support to SJS patients and their family and friends.
- A message board for children and teens with SJS/TENS
- A bi-annual newsletter addressing practical and emotional aspects of SJS targeting SJS patients and families.
- Support groups currently in 24 states and 8 different countries with SJS Support Group facilitators who are willing to speak or meet with others experiencing the challenges of SJS.
- SJS Fact Sheet
- An SJS blog, started in January 2011, written by SJS parent Jean McCawley who shares her and her daughter's story of SJS targeting SJS patients and families.
The primary mission of the National Keratoconus Foundation (NKCF) is to disseminate information about keratoconus to patients, their families, and eye care professionals. The NKCF is dedicated to increasing the awareness and understanding of keratoconus and the support of scientific research into the cause and treatment of keratoconus. Keratoconus support resources accessible through the foundation’s website include:
- A web-based bulletin board to facilitate interaction among the keratoconus community
- A worldwide newsletter published three times yearly for patients and medical professionals to learn about new treatment options, patient experiences, and the latest research in the field
- Assistance with making personal contact with other keratoconus patients and help with setting up local support groups
- KC-Link worldwide list-serve for people with keratoconus
- Referral lists by state for eye care providers with special expertise treating keratoconus
KC Freedom is a community forum for individuals suffering with keratoconus. With 2,400 members, KC Freedom offers conversations on a variety of topics related to keratoconus, including family support, research and development, keratoconus experiences, treatments and disease management.
Since 1983, the Sjögren's Syndrome Foundation has provided patients with accurate, up-to-date medical information and coping strategies in addition to serving as a national advocate for Sjögren's syndrome. This organization strives to educate patients and their families, increase public and professional awareness of Sjögren's syndrome, and encourage research into new treatments and a cure. Consult the foundation’s web site for:
- The Moisture Seekers newsletter with valuable coping tips, the latest medical research news, and expert answers for medical questions (current newsletter available for members only)
- Live, Learn & Share Seminars with medical experts who discuss an array of topics pertinent to Sjögren’s syndrome patients and their families
- Links to connect with more than 80 local support groups across the U.S. and Canada
- Membership enrollment that offers access to the online community, newsletters and educational materials, product guides, and discounts on literature and products
Sjogren's World is worldwide internet community created for those who have Sjogren's Syndrome. It is a place for all to meet and share experiences and knowledge with others who live with Sjogren's in order to improve quality of life.Supports available include:
- a discussion forum with more than 1,400 members
- live, moderated and unmoderated chats; moderated chats are available in multiple time zones on a weekly basis
- A list of http://www.sjogrensworld.org/books.htmusefull resources and books on Sjogren's sundrome
AutoImmunity Community is a message board dedicated to the people battling one of more than 60 autoimmune diseases, and is especially beneficial for those with multiple conditions. Friends and family are always welcome, as well as those who simply suspect they have an autoimmune disease. The site includes forums for specific disease types, including hair and skin conditions; pain/fatigue syndromes; and multiorgan syndromes; as well as a general forum.
The Dry Eye Zone provides an information portal and community center focused on improving the quality of life for people suffering from chronic or severe dry eye due to illness, injury, medication side-effect, aging, or other causative factor. The site offers tips on getting the best care for your condition, advice for living well with dry eye, coping strategies, and the latest treatments and research in addition to the following extra features:
- KeratoScoop, a weekly newsletter containing articles on dry eye research, new drugs, effective treatment protocols, and practical advice for dealing with dry eye
- Dry Eye Talk, an online forum to discuss relevant issues and personal experiences with other dry eye sufferers
- Dry Eye Digest for recent research and news, and opinions by founder Rebecca Petris
BMT InfoNet, the blood and bone marrow transplant network, is an all-inclusive information resource for blood and bone marrow transplant patients, survivors, and their families. The network’s primary goal is to provide credible information and emotional support to allow for educated and informed decision-making before, during, and after transplant. BMT InfoNet fulfills its mission by providing:
- BMT Infonews, a quarterly newsletters detailing new research, patient stories, and information resources
- An annual Second Chance at Life symposium gathering hundreds of survivors and medical professionals to offer guidance and support for managing post-transplant challenges
- Caring Connections support groups to enable personal connections for patients and family members who are considering or who have been through a transplant
- Access to over 159 different cancer-related e-mail lists
- A detailed resource directory for patients and families to find the help they need
ExploreBMT.org is a one-stop resource for patients, families and caregivers impacted by a marrow or cord blood transplant. The purpose of this online resource is to serve as a comprehensive, guided source for transplant-related resources from diagnosis to survivorship. The website offers:
nbmtLINK.org is the website of the National Bone Marrow Transplant Link. Their mission is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services.
The website offers:
- quick answers to common questions
- in-depth information on a wide range of related subjects
- practical support for everyone affected by the transplant process
- links to useful online resources
The Dysautonomia Foundation is a nonprofit organization dedicated to the support of medical treatment, research, public awareness, and social services for people affected by Familial Dysautonomia (FD). The Foundation established the world's only FD treatment centers (two of them) and is the largest single source of funding for research and treatment specifically for the benefit of people with FD. The organization offers:
- A newsletter for families that is published several times a year
- An annual conference that brings together families, researchers, and health-care providers
- Numerous fundraisers to support research and the foundation’s mission
The mission of the National Foundation for Ectodermal Dysplasias is to empower and connect people touched by ectodermal dysplasias through education, support, and research. Through their website, the foundation offers numerous supports for patients and their families, including:
- A quarterly newsletter with timely information compiled by parents, researchers, patients, and supporters
- An annual conference for information sharing and support
- Access to support groups for proactive networking
- Free weekly interactive conference calls on a variety of educational topics related to ectodermal dysplasias
The International Scleroderma Network is a full-service nonprofit scleroderma charitable foundation providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension, graft versus host disease, Stevens-Johnson syndrome and Sjogren’s syndrome. The website, which is translated into 23 languages, offers:
- A collection of patient, caregiver and survivor stories
- A community forum and a chat room
- Extensive information on a variety of topics related to scleroderma, including quality of life, sexuality, depression, and pain management
Facial Pain Association
The Facial Pain Association is an online support for those suffering from facial pain, including trigeminal neuralgia, as well the health care and dental providers and family members who care for them. Available resources include:
- database of knowledge resources
- list of health care providers, sortable by location or specialty
- an online community, including a discussion forum, blogs and chat.