I have been doing a lot of research on CRPS for kids and I hope that some of these links will help save you valuable time. This is research in progress. If you find a link that does not pertain to children with CRPS/related symptoms; if there is a dead link; or, if I have missed a good link that should be added, please email me!
Agencies and Organizations
American RSD Hope Dedicated to increasing awareness of CRPS
Clinical Trails Involving CRPS
Family Voices, Inc. 888-835-5669 Offers information on healthcare policies relevant to special needs children in every state.
Friends’ Health Connection 800-483-7436 Links persons with illness or disability and their family caregivers with others experiencing the same challenges. (A great idea for a site but there seems to be limited interaction online)
International Research Foundation for RSD / CRPS Website for Dr Kirkpatrick in Tampa, Florida who specializes in Ketamine Infusions. The videos were very educational
.National Alliance for Caregiving Helps family caregivers learn about information, videos, pamphlets, etc. that have been reviewed and approved as providing solid information.
National Health Council Provides a united voice for people with chronic diseases and disabilities.
Pub Med Health U.S. National Library of Medicine – The World’s Largest Medical Library.
Reflex Sympathetic Dystrophy Association Promotes awareness of CRPS and raises funds for research into the cause and cure of CRPS.
RSD/CRPS ADVISORY AN INFORMATION AND RESOURCE SITE!
Social Security Benefits for people with disabilities.
The Coalition Against Pediatric Pain Uniting and educating families about Pediatric Pain.
The Healing Project Proves support, education, resources, and help to those who face life-altering diseases and encourages those who have a personal story to share can submit an essay that will provide insight, hope, courage, and healing to those who may be newly diagnosed or living with the disease.
Travel Assistance and Recreation Resources
Able Travel Site Provides accessible African safaris and worldwide adventure travel advice for wheelchair users and physically disabled people.
Access-able Travel Source Dedicated to mature and disabled travelers 1995, Access-able provides information on disability magazines, how to travel with special needs, guides for cities, resorts and attractions, and where to find wheelchair and scooter rentals when you are on the road.
Accessible Vacations International reservations site provides one-stop travel planning and booking capability for wheelchair accessible vacations, including booking disabled-friendly hotels, resorts, and other travel options.
Access Travel Center Features a broad array of travel related information including links to discount travel information, cruises, hotels providing access for disabled guests, transportation and more.
Disabled Travelers Provides information on businesses from around the world that specialize in travel for the disabled, including travel agents, tour operators, adventure travel companies, accessible cruise specialists, accessible van and equipment rentals, travel companions, home exchanges, and access guides for wheelchair users and other disabled travelers.
E-bility Access Travel: Australia Accessible travel website featuring disability related travel information, Australian tours, articles resources, services and products.
Emerging Horizons Consumer oriented online magazine covering disabled friendly travel, Emerging Horizons’ primary focus is travel for people with mobility disabilities; everybody from wheelchair-users to slow walkers. Information covers resources, news and travel tips.
Gimp on the Go Travel Reviews, tips, photographs and resources on a wide range of travel-related topics.
Global Access News Accessible travel reports and free e-zine.
Go Africa Safaris & Travel Specializes in working with wheelchair travelers and customizing safari trips to Kenya and Tanzania, based on individual interests and mobility requirements.
Handicapped Travel Club (HTC) Encourages RV traveling for people with a wide range of disabilities. HTC encourages people with disabilities and their families to travel, to meet and to share information on making recreational vehicles accessible for the disabled.
New Directions Travel Provides high quality local, national, and international travel vacations and holiday programs for people with mild to moderate developmental disabilities.
Rolliday International disabled friendly travel resource that provides information on different types of holidays and a database of 3000 lodging accommodations for people with disabilities.
Rolling Rains Travel Report Provides reviews of the tourism industry from a disability perspective and follows the development of accessible leisure and travel opportunities worldwide.
Swedish Independent Living Center Vacation Home Swap Providing accessible vacation home exchange for people around the world with disabilities.
The Association of Hole in the Wall Camps International family of camps and programs that provide life-changing experiences to children with serious medical conditions, free of charge. Their goal is to extend these experiences to as many children as possible around the world.
Travel Access Services (TASC) International organization that offers a database to assist individuals with travel planning by matching travelers’ accessibility needs with disabled friendly travel and hospitality providers.
Travel with a Challenge Provides information about cruise and land vacations specifically designed for mature travelers and those who are mobility challenged.
Hospitality Homes Provides temporary housing in volunteer host homes and other donated accommodations for families and friends of patients seeking care at Boston-area medical centers.
The National Association of Hospital Hospitality Houses Supports homes that help and heal to be more effective in their service to patients and families.
The Opening Door Mission to open doors to persons with disabilities so they can enjoy all that the world has to offer, this organization’s web site, travelguides.org, offers disabled friendly travel links, access guides, databases and publications.
World on Wheelz Works with a travel agency to arrange and book accessible trips for disabled travelers.
Medication Assistance and Resources
Boston Children’s Hospital Waltham Clinic Specializes in the treatment of CRPS
Go Fund Me Easiest way to raise money online. Create your own personal donation website.
Medicare Medicare and Medicaid Services (CMS) the agency responsible for Medicare Rx. The toll-free number is 800-MEDICARE.
National Association of Hospital Hospitality Houses (NAHHH) 800-542-9730 Represents organizations that provide lodging (and service) for families receiving medical care away from home; furnishes information about hospitality homes in the caller’s area; offers newsletter; and publishes an annual directory of facilities offering lodging.
NeedyMeds Helps people who cannot afford medicine or health care costs.
Next Step in Care Offers a range of guides and checklists designed to make patients’ transitions between care settings smoother and safer.
Patient Advocate Foundation Serves as a liaison between patients and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relating to a patient’s condition.
Patient Services, Inc. (PSI) Provides peace of mind to patients living with specific chronic illnesses by: locating health insurance in all 50 states, subsidizing the cost of health insurance premiums, providing pharmacy and treatment co-payment assistance, assisting with Medicare Part D Co-insurance, and helping with advocacy for Social Security Disability.
Personal Health Record Helps you keep your family member’s medical information organized in one place.
RxAssist Patient assistance programs run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine.
The HealthWell Foundation Helps individuals with insurance who cannot afford their co-payments, coinsurance, and premiums for important medical treatments.
Hill-Burton Free and Reduced Cost Health Care Provides services to individuals unable to pay for hospitals and health facilities.
The National Alliance on Mental Illness (NAMI) List of free or low-cost mental health medications provided by pharmaceutical companies.
Society for Accessible Travel and Hospitality Founded in 1976, “SATH” is a nonprofit organization that raises awareness of the needs of travelers with disabilities and works to expand travel options.
The National Human Genome Research Institute Provides some resources for finding information on financial aid for medical treatment, although it is not authorized to provide routine medical assistance or treatment funds.
The Patient Access Network (PAN) Foundation Helps the under-insured access the health care they need to continue living a relatively normal and productive lifestyle.
U.S. Department of Health and Human Services Provides information on planning and financing long-term care including all major types of public and private financing to help cover long-term care costs.
Easter Seals 800-221-6827 Provides a variety of services at 400 sites nationwide for children and adults with disabilities; in-home care, camps for special needs children and more.
Faith in Action 877-324-8411 Interfaith volunteer care-giving program of The Robert Wood Johnson Foundation. Makes grants to local groups representing many faiths who volunteer to work together to care for their neighbors who have long-term health needs.
National Council on the Aging, Inc. 202-479-6672 Provides respite (and other services) by matching men and women volunteers over the age of 50 with families of children who have disabilities or chronic illness.
National Respite Coalition (NRC) 703-256-9578 Provides a list of states that have respite coalitions and their available services. Focused on helping families of children with special needs.
National Respite Locator Service 800-473-1727, ext. 222 Access a list of sites nationwide. While the vast majority focus on respite care for families of special needs children and caregivers.
Shepherd’s Centers of America Provides respite care, telephone visitors, in-home visitors, nursing home visitors, home health aides, support groups, and referrals for accessing other services available in the community.
Share Information Here! Travel Tips – Event Notices – Free Services
Do you have some travel tips to share or does your non-profit organization provide free services for individuals that are mobility-challenged? If so, please submit your information below.
CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.