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Useful Links

Information and Support for Patients and Families

Family Village
The Family Village at the University of Wisconsin-Madison provides a wide array of resources for people with disabilities, their families, and service providers. This community offers information, resources, and peer support.

Florida Institute for Family Involvement
FIFI is a clearinghouse for information for children with special health care needs, and works closely with public and private programs to foster partnerships between providers and families. This site offers a forum for families to partner with one another for support, as well as to receive vital information.

Foundation for Informed Medical Decision Making
The mission of FIMDM is to strengthen the ability of patients in making decisions about their health care. The site offers evidence-based information about treatment options, interviews with patients, decision-aids to guide decision-making, and other tools on a variety of conditions.

Improving Chronic Illness Care
As a national program of the Robert Wood Johnson Foundation, ICIC is dedicated to improving the experience of chronic illness care for patients and their families. This site provides comprehensive resources about the Chronic Care Model, which views the patient as a partner with providers in decision-making, participation in care, and quality improvement. While designed mainly for professionals, the site offers a Patient's Guide for patients who wish to learn more about improving chronic illness care.

Medically Induced Trauma Support Services
MITSS was created out of one woman's crusade to educate others about medically induced trauma due to her own experience of care. This organization provides information on support and education about medically induced trauma from the perspectives of clinicians, patients, and families.

Parents Helping Parents
This organization is a parent-directed resource center for children with any kind of special need and their families. A variety of services are offered including parent-to-parent support, physician training, information and resources, technical assistance, and links to other online resources.

Parent to Parent of Vermont
This parent-to-parent organization, founded in 1987, serves as an exemplary statewide program to help families with children with special needs find information and support from other parents, health care professionals and their communities. The organization also offers several opportunities for families who want to become more involved in changing the system, including a program to train families to serve as faculty in medical education.

Patient Decision Aids
This site is part of the Ottawa Health Research Institute and was created to assist clinicians and patients make difficult health care decisions. The program is research-based and the site offers online tools, clinician training programs, research tools, and other resources.

Depression and Bipolar Support Alliance
This consumer driven organization works to support individuals affected by mental illness through trained peer mentorship. There are helpful links and resources on a variety of mental health topics to support those interested in advocating and learning about supportive services for the mental health community.

United Hospital Fund
Although this is a New York state organization, it has been at the forefront of shaping positive change in health care systems. A key focus has been on aging and chronic care and the site offers a section titled, Redesigning Health Care Services, containing family-centered resources and information for supporting caregivers.

Patient and Family Advocacy

Center for Effective Collaboration and Practice
It is the mission of CECP to support and promote a national preparedness to foster the development and the adjustment of children with or at risk of developing serious emotional disturbance. The center has published a series of monographs titled, Systems of Care: Promising Practices Children's Mental Health, and offers resources for particularly for families, titled Briefs for Families on Evidence-Based Practices.

Families USA
This is a nonprofit organization that works at national, state, and grassroots levels with organizations and individuals assisting them in participating in shaping health care policies. A primary goal is to educate the public and policy makers about the experiences of families within health care systems and develop solutions to the problems families face.

Family Voices
Family Voices offers a variety of information and resources for families and providers caring for children with special health care needs. Family Voices activities embody the principles of patient- and family-centered care. There is a downloadable brief on families partnering with researchers to improve services for children with special health care needs, available at In addition there are some helpful resources for parents pursuing leadership roles.

Federation of Families for Children's Mental Health
The FFCMH is a "family-run" organization dedicated to improving children's mental health care. The sections, Family Leadership through Policy, Systems of Care, and Evaluation, offer patient- and family-centered mental health materials and resources to promote involvement in advocacy, improvement activities, and evaluation efforts.

Healthcare Communication Project, Inc.
This non-profit organization based in New York state, offers a variety of practical resources for patients, families, and others who want to improve the physician-patient relationship and become active in their own healthcare.

Kids as Self-Advocates
A project of Family Voices dedicated to meeting the needs of teenagers and young adults with special health care needs, along with their family members. This gateway connects children and young adults from all over the country providing information on specific conditions, along with support.

National Family Caregivers Association
Founded in 1993, NFCA serves as a clearinghouse of information and support for those caring for others who are aged, disabled, or chronically ill. There are a variety of helpful stories and tools to empower family caregivers and promote advocacy and activism. This site also connects families to other family caregivers.

National Health Council
This policy and membership organization works to improve the quality of health care. NHC has a section titled, Integrated Patient-Centered Care Initiative, promoting collaboration and interdependence across the health system and improved quality of care. In addition, NHC is driving the Putting Patients First campaign dedicated to educating and empowering consumers.

National Patient Safety Foundation
With its mission to improve the safety and welfare of patients in the health care system. NPSF provides an indispensable amount of resources and links. An on-line journal entitled, Focus on Patient Safety is available and includes discussions on patient and family involvement in safety efforts.

Pacer Center
This site serves parents, professionals, children, and young adults with special health care needs. It offers educational resources and links to supportive services for the special health care community. Resources are available on parents helping parents, disability laws and regulations, advocacy programs, and multicultural care topics.

Voice for Patients
Voice4Patients is an organization devoted to empowering patients to be their own health care advocates in order to address patient safety concerns and medical errors. The organization advocates building partnerships between patients and providers and provides information and tools to strengthen consumer skills.

Patient and Family Involvement in Research and Evaluation

Beach Center on Families and Disability
Based at the University of Kansas, this organization has over fifteen years of experience in conducting research in partnership with individuals with disabilities and their families, professionals who provide services to them, and representatives of the communities in which they live. The site includes stories, references, and resources about this research framework, called Participatory Action Research.

Center for Medical Home Improvement
A "medical home" is a model for providing comprehensive primary care to children with special health care needs. CMHI has set out to engage families and professionals in quality improvement to build and enhance medical home practices. The site has practical assessments and resources for providers in community practices and families serving on improvement teams including the complete Medical Home Improvement Kit with measurements, strategies, and A Guide for Parent and Practice "Partners" Working to Build Medical Homes for CSHCN.

Consumer Quality Initiatives - Participatory Action Research Center
The PARC is devoted to guide the research and evaluation activities of the Consumer Quality Initiatives - a consumer directed mental health organization based in Massachusetts . Their mission is to prepare and support patients and families to partner with professionals in planning, implementing, and disseminating the results of research and evaluation projects.

Research and Training Center on Family Support and Children's Mental Health
Based at Portland State University, Portland, Oregon, this organization concentrates on supporting community-based, culturally competent, and family-centered services for children with mental, emotional, or behavioral disorders and their families. For over two decades, the Center has actively promoted partnerships among families, providers, and policy makers in research and evaluation and offers practical tools and resources on the site.