Community Resources
Specialized Airline Flight Information
AMR Air Ambulance - AMR Air Ambulance delivers fixed wing air ambulance transport services that provide true "bed-to-bed" service, including specialized medical care during air and ground transportation, as well as any other incidentals.
AngelFlight - Free airfare to over 100 hospitals and organizations nationwide as deemed eligible by Southwest Airlines for those who qualify.
Air Charity Network - Free air transportation to specialized healthcare facilities for those who are financially distressed or otherwise unable to travel on public transportation.
Mercy Medical Angels - Assistance with ground and air travel to access specialized medical evaluation, diagnosis and treatment not available locally as deemed eligible by Mercy Medical Angels.
Used Medical Equipment and Assistive Technology
Recreation
National Parks Pass for Permanent Disabilities - offers free admission to Federal National parks to those with a permanent disability.
RI State Parks Accessibility and Pass for the Disabled - offers free admittance to state parks after applying through the location stated within the link. There are many handicapped-accessible options available to enjoy the park's features.
MA Department of Conservation and Recreation Accessibility Program - is dedicated to providing outdoor recreation opportunities in Massachusetts State Parks for visitors of all abilities.
CT State Parks Accessibility - Dept of Energy and Conservation works to ensure all have access to recreational opportunities at CT state parks, including camping, swimming, hiking, and more.
Accessible RI - provides a listing of recreational spots, restaurants, and other public places in RI that have been made accessible according to ADA guidelines.
Adaptive Sports New England - offers opportunities for children and young adults in New England with a disability to participate in sports. They collaborate with others who offer adaptive and inclusive programs, as well as highlight programs throughout the NE area, and provide a listing here.
Maine Adaptive Sports and Recreation - a year round adaptive recreation program for children and adults.
Wheelchair Escapes - travel advocates with years of experience in mobility-challenged traveling.
Waypoint Adventures - strives to offer programs for the young disabled to build character and strength through adventure experiences and works with schools, organizations, families and individuals to reach these goals.
New Directions for People With Disabilities - "provides leisure and educational travel opportunities for teenagers, adults and seniors who have brain impairments such as mild to moderate developmental disabilities, cerebral palsy, Down Syndrome and autism".
RNE realizes the value in awareness of resources available to meet the many needs of living with a rare and complex disorder. We understand how overwhelming it can be when trying to juggle medical appointments, symptoms, family life, school issues, and all the other aspects of managing a complicated illness.
RNE strives to discover available resources and to highlight them through our resource pages, making it easier for patients and families to connect with.
Please contact us with any info to add at Info@rarenewengland.org !
State-Specific Resources
Maine
Maine Parent Federation provides information, referral, one on one telephone support, and training to parents of children with disabilities or special health care needs and the professionals who work with these families
A Guide to Services for People who are Deaf or Hard of Hearing - a listing of helpful resources.
New Hampshire
Massachusetts
Rhode Island
Economic Progress Institute provides a listing of government assistance programs and community-based resources available in Rhode Island
Connecticut
myTEAM TRIUMPH is a national non profit athletic ride-along program created for children, teens, adults and veterans with disabilities who would normally not be able to experience endurance events such as running road races or triathlons. mTT provides the equipment, pays for race registration fees and provides all of the support so that Captains (people with disabilities) can experience the excitement and fun of being in a race. For more information on being a Captain or getting involved with mTT, contact Curt Lueker at clueker@myteamtriumph-ct.org or 646-330-1235; also visit https://www.facebook.com/myteamtriumphct/.
Favor offers family advocacy for children's mental and behavior health.
Path is a network of families providing informational and emotional support to others who have a child with developmental or health related needs.
CT Family Support Network helps families with special health care needs and the physicians who care for them, find information, resources and supports.
CT Patient Advocacy Center offers information and support to families of children with any disability or chronic illness, age birth through 26.
Vermont
Informational Resources Throughout New England
2-1-1 is an easy access referral service sponsored by the United Way made available to share information pertaining to each state's assistance with various family need such as health care, housing, early education, and more.
Disabled Parents is an online community offering support and information about living with a disabled family member.
MISC but Very Helpful Resources
Patient Advocacy Foundation - "provides professional case management services to Americans with chronic, life threatening and debilitating illnesses", free of charge. "PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys".
National Institutes of Health, National Human Genome Research Institute - offers an abundance of information pertaining to education, health, research, and much more on subjects of genetics and genomics, rare disease, patient care, and more.
Assisted Living- provides comprehensive information for people living with disabilities on topics like available care options, financial support, and free resources that are available from each state
Best Mattress Reviews - provides a mattress and bedding guide for people with disabilities. "In a 2016 study titled, ‘Sleeping while disabled, disabled while sleeping’, Dr. Benjamin Reiss notes that nearly every disability diagnosed today entails some sort of sleep disruption ― although the nature of and reasons for this disruption vary from person to person". This site provides an overview of bedding products for people with disabilities, including beds and bedding accessories.
"College Resources for Students with Disabilities: Best Colleges, Gov't Programs, Scholarships, and Helpful Apps"- provides a guide to the best colleges, scholarships, assistive tech, and other helpful resources for college students with disabilities.
Funding Options
United Healthcare Children's Foundation- " provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan".
First Hand Foundation - "provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care".
Needy Meds - "maintains a website of free information on programs that help people who can't afford medications and healthcare costs".
Hospitality Home - "provides short-term housing in volunteer host homes for families and friends of patients receiving medical care in the Boston area".
Healing The Children - "are committed to meeting the healthcare needs of children worldwide" and organizes medical trips by medical personnel to be brought to the medically needy as well as out-of -the-country needy to the US.
Healing The Children Northeast, INC - dedicated to providing donated medical care to children in need.
Healthwell Foundation - "provides financial assistance to eligible individuals to cover coinsurance, co-payments, health care premiums and deductibles for certain medications and therapies".
Rx Assist - Patient Assistance Program Center - "RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need".
PAN Foundation - "PAN Foundation is focused on ensuring underinsured patients living with life-threatening, chronic and rare diseases get the financial assistance they need so they can start focusing on what matters most: their health".
Need Help Paying Bills - offers listings of resources that offer a number of ways to get help with paying bills, including who to talk to regarding problems with paying utilities, housing, medical bills and much more.
Support
RareConnect.org - A safe, easy to use platform created by EURORDIS where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease. Patients can find connections with over 90 different diseases here, most with links to patient groups and moderators from around the world. If a specific disease is not listed, they can look at Discussion Groups.
Caring4OurKids - curates online resources that can help parents and caregivers of children on the Autism Spectrum.
A Resource for Parents of Kids with ASD, CFS, or Fibromyalgia that includes direction toward services to help in estate panning, home modifications, moving with children with special needs, and more.
Mesothelioma Veterans Center- provides information and assistance to veterans regarding treatment, clinical trials, and VA benefits for veterans suffering from asbestos illnesses. The Mesothelioma Veterans Center was founded by retired veterans and veterans advocates who have veterans get approved for their VA benefits after developing mesothelioma or asbestos-related lung cancer from their asbestos exposure in the military.
