Offers a variety of services for elders, their families, and care- givers, and persons with disabilities, so that they can remain in their homes such as Adult Foster Care and PCA services as well as offering a full range of information and referrals.
Offers support, advice and information on the challenges that families face when there is no diagnosis.
Offers grants of up to $5,000 for families of children with critical healthcare treatment, services, or equipment not covered or not fully covered by their parents’ health benefit plans.
Dedicated to helping children obtain the medical supplies and equipment they desperately need.
Provides funding for the specialized care and treatment of New England children born with birth defects, developmental and intellectual disabilities, and genetic diseases.
Helps people talk about their wishes for end-of-life care. Website includes a helpful Starter Kit.
Provides information and resources for families in need of a speech & language pathologist with expertise in dysphagia or swallowing disorders.
Dedicated to delivering the highest quality of care to children with a host of orthopaedic and neuromusculoskeletal disorders and diseases, as well as cleft lip and palate.
Pediatric skilled nursing facility offers long- and short-term respite care for children with highly specialized medical needs.
Led by Boston Children’s Hospital, Safe Kids implements evi- dence- based programs such as car-seat checkups, safety work- shops and sports clinics, to help prevent childhood injuries.
A unique federation of more than 140 nonprofit voluntary health organizations serving people with rare disorders and disabilities. Offers Patient Assistance and Patient Organization resources.
Provides information about rare genetic conditions, relevant research, genetic testing, services available, advocacy groups, and information cited in medical journal articles.
May be able to help you get brand-name and generic medicines free or nearly free if you don’t have prescription coverage and can’t afford your medicines.
Provides free health care advocacy services to patients with life- threatening and serious illness and their families.
Seeks to safeguard patients through effective mediation assur- ing access to care, maintenance of employment and preserva- tion of financial stability relative to their diagnosis of life-threat- ening or debilitating diseases.
Provides a range of resources through the Behavioral Health Library. Hosts conferences, workshops, family support programs, and can assist you with your research needs.
Genetic counselors work as members of a health care team pro- viding information and support to families who have members with birth defects of genetic disorders and to families who may be at risk.
Database of medical information including the health care sys- tem, access to journals, abstracts and medical records.
Consortium of genetic service providers and consumers of genetic services promote health by increasing the awareness of genetic concerns, the understanding of the role of genetics in health care, and the availability of appropriate services.
Provides people with information and support when they are planning ahead, caring for a loved one, living with an illness or grieving a loss; also state specific advance directives.
Activities focus on pediatric clinical care and quality improve- ment; offers webinars, conferences, online toolkits on family leadership, ADHD, and childhood obesity.
Consumer health publication and health information resources, including grants, research, and clinical trials.
National online service to help patients identify prescription assistance programs, free and low-cost clinics, condition-specific programs, and camps and associated scholarships.
Focused on health promotion/obesity management among people with disabilities.
Organization’s website includes Find A Clinic and free discount pharmacy card. Clinics may provide a range of medical, dental, pharmacy, vision and/or behavioral health services.
An online resource with links to articles, policy statements and reports for anyone interested in creating a medical home for children and youth.
Website offers a comprehensive patient section on how to find a doctor, speakers, patient safety, medication information, health- care proxy information, and an online newsletter.
Association serving 52 community health centers through advo- cacy, technical assistance, training, and development. Patient Referral Line: 800-475-8455.
Dental referral service for children with special needs, low in- come dental assistance by application.
Provides recreation and rehabilitation programs including physical therapy, occupational therapy, therapeutic riding, swim and aquatics, speech therapy, early intervention, day care, and Personal Care Attendants.
Provides recreation and rehabilitation programs including physical therapy, occupational therapy, speech therapy, early intervention, day care, and Personal Care Attendants.
Provides integrated comprehensive care coordination to people enrolled in MassHealth that have complex lifelong needs. MCCN takes the best resources and matches the supports to each person’s needs.
Oversees licensure of physicians. Online resources include physician profiles, Patient Complaint Line, office-based surgery guidelines, and tips on financial issues related to healthcare.
CAPV has launched a new Look4Help Public Resource Directory for residents who live in Franklin and Hampshire counties and North Quabbin, western MA looking for housing, transportation, food resources and more.
A compendium of online health information in a wide variety of languages and EthnoMed, which provides ethnic and medical information pertinent to immigrant and refugee groups.
Provides information about Medicaid and the Children’s Health Insurance Program CHIP-for families seeking health insurance coverage for children and teens and families needing help locat- ing a dentist.
Provides regulatory information, palliative care providers, and community-based programming to support individuals with life-limiting conditions who are facing end-of-life planning decisions.
Promotes a better understanding of the health/education needs of students with asthma and other chronic health conditions.
Public interest law firm whose mission is to provide pro bono legal representation to low-income residents experiencing diffi- culty accessing or paying for needed medical services.
A nonpartisan policy resource and technical assistance center partnering with foundations, government agencies, school dis- tricts and providers to support school-connected initiatives.
Promotes positive decision-making skills, provides preventive health and social services.
NHIC is a health information referral service that links consumers and health professionals with health questions to organizations best able to provide answers.
A coalition of healthcare consumers and advocates providing information, referral, personal and legal advocacy regarding health care and health insurance in Massachusetts.
Empowers parents of premature babies through support, advo- cacy, and research to improve outcomes for their preemies and themselves.
of support. The peer-to-peer relationship offers support from someone who is familiar with the experience of preterm birth, life in the NICU, a child born with special health care needs, preg- nancy and/or infant loss.
Provides consumer-friendly information about a large number of genetic conditions. Includes a resource guide on finding genetics professionals.
Advocates for improved access to care, diagnosis, early and in- novative medical intervention, long-term lifestyle improvement, and therapeutic compliance.
Resource website to explain the concepts and provide resources around Palliative Care services, including Pediatric Palliative Care services around the country.
Represents more than 600 consumer and health professional organizations, working together to improve the quality of life for everyone impacted by genetics.
Offers social opportunities to children 3 months to 6 years, with complex medical needs requiring individualized education, developmental, and rehabilitative services.
Provide information so that families can make informed choices about health care for their children and youth with special health care needs.
Share resources and updates about health care legislation and how it affects families of children with special needs, promote opportunities for families to work in partnership with profession- als in the health care service system, and support each other in our advocacy efforts on behalf of children. c/o Federation for Children with Special Needs
A grassroots network of organizations and individuals working for the consumer perspective in national/state health policy.
Dedicated to raising awareness of the need to screen, identify, and develop medical treatments and protocols to enhance the lives of those affected by rare diseases.
A national grassroots network advocating on behalf of children with special health care needs regarding health care reform on the state and federal level.
A durable medical equipment DME-reuse program managed by MA Rehabilitation Commission. Gives a second life to donated DME such as wheelchairs, adapted strollers, standers and gait trainers, shower chairs, and more. Offers refurbished devices at no cost.
Wellness and exercise programs that help people with arthritis lead healthier, active lives with online and off-line resources.
Offers disability benefits and educational services including ergonomic evaluations, education and training programs, vocational rehabilitation services, assistance with Social Services Disability Insurance SSDI-applications and appeals.
Online assistance on Specific Advance Directives, hospice, end- of- life, financial planning, caregivers, grieving, palliative care.
Hosts Mayor’s Health Line; offers comprehensive child, adoles- cent, and family health programs; community-based initiatives for the homeless.
