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Last Updated:
March 27, 2017
Family Websites

American Association on Intellectual and Developmental Disabilities
AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

BlazeSports America
BlazeSports America’s mission is to change the lives of children and adults with physical disabilities through sport.

CanChild Centre for Childhood Disability Research
CanChild Centre for Childhood Disability Research is a research and educational centre located at McMaster University in Hamilton, Ontario, Canada. Their research is focused on improving the lives of children and youth with disabilities and their families.

Catalyst Center
Our work at the Catalyst Center focuses on helping to create strategies that improve coverage and financing of care for children with special health care needs at the policy level.

Cerebral Palsy Alliance
Cerebral Palsy Alliance is committed to providing world-class services for people living with cerebral palsy and similar disabilities, and their families. "As an organisation we embed our values of Integrity, Passion, Excellence, Courage and Respect in our practices everyday. We are here to make a difference in people’s lives and support them in connecting and engaging them with their communities."

Cerebral Palsy: A Complete Guide for Caregiving, by Freeman Miller & Steven Bachrach
This book on caregiving was written by two AACPDM members

Cerebral Palsy Now
CP Now is a non-profit organization working to advance neurorecovery, wellness and lifelong support for people with CP.  Their Cerebral Palsy Tool Kit was created to help parents and families sort through some of their emotions and answer questions and concerns related to CP. It acts as a guide through the initial diagnosis period, direct to other helpful resources and provide information about the different approaches to treating and managing CP.

Cerebral Palsy Research Registry
Cerebral Palsy Research Registry (CPRR) is a multi-institutional collaborative effort whose primary mission is to improve our understanding of cerebral palsy. We believe that by working together, families and researchers can make a difference in the lives of people affected by cerebral palsy.

Childhood Disability LINK
A website linking information and new knowledge on childhood disability to service providers and families.

CPChatNow
A companion to the weekly live Twitter chat (Wed, 8pm EST) open to those with cerebral palsy, parents, siblings, caregivers, - ANYONE!

CP Daily Living
CP Daily Living is an educational resource website and Facebook page. CP Daily Living is designed to give families and caregivers dealing with CP a central place for practical information and resources within the context of an emotionally-supportive community.

Cure CP
Cure CP is a non-profit organization committed to funding the support of Cerebral Palsy research. Their mission is to undertake and support initiatives at research institutions that focus on developing new therapeutic methodologies for the treatment of CP.

Developmental Medicine and Child Neurology - The Official Journal of AACPDM
Did you know that anyone can access articles published one year ago or more in Developmental Medicine and Child Neurology, for FREE? Any issue at the link above that has an open lock next to it can be accessed at no charge!
Patients, parents & caregivers - you can also access articles within the last year at a cost of just $3.50 per article. That's one tenth or less of the price professionals pay. Pick an article, click for full access (html or pdf), and scroll about halfway down the page to where it says "Patient ACCESS" in the center column. Clicking the word "access" in that section will give you more information.

Family Voices
Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs.

Friendship Circle
In 2011, Friendship Circle had a dream of establishing a resource blog for the benefit of families with special needs. The Friendship Circle Blog has since come to life, and to-date, has published hundreds of articles that provide crucial resources for parents and special educators.

Jewel Kats (author)
Jewel Katz's books have been featured in Ability Magazine (USA) twice. She’s authored eight books; five are about disabilities. The Museum of disABILITY History has celebrated her work with a two-day event.

KidsHealth
KidsHealth from Nemours is a great general resource for childrens' health, and has good basic information on CP that can be shared with friends or family.

Pedal-with-Pete Foundation
Pedal-with-Pete is a philanthropic organization, dedicated to raising funds for research to improve the quality of life for persons with cerebral palsy. In 1993, the Pedal-With-Pete Foundation was established to raise money for research to help prevent and treat the effects of cerebral palsy. The Pedal-with-Pete Foundation annually moderates three charity cycling events in the midwestern US.  Pedal-with-Pete Foundation funds a $25,000 research grant through AACPDM every year!

Reaching for the Stars
Launched in late 2005 by two mothers in Atlanta, Georgia, Reaching for the Stars has grown into the largest North American pediatric Cerebral Palsy nonprofit foundation led by parents, with a focus on the Prevention, Treatment and Cure of Cerebral Palsy.

Sharon Draper - Out of My Mind (book)
This book is about Melody, an 11 year old girl with spastic bilateral quadriplegic cerebral palsy. It spent a year on the New York Times bestseller list, and has gotten some rave reviews.

THREE TO BE
THREE TO BE’s mission is to support and advance the development of innovative research, therapies and education for children with neurological disorders and their families.THREE TO BE envisions infinite possibilities for children with neurological disorders by focusing on innovation, education and empowerment.

UN Department of Economic and Social Affairs (DESA)
The publication from the UN Department of Economic and Social Affairs (DESA) reviews the concept of accessibility and its role in achieving inclusive and sustainable development. It propositions that accessibility be, not only a means and a goal of inclusive development, but also an enabler of an improved, participative economic and social environment for all members of society, including persons with disabilities.

United Cerebral Palsy (UCP)
UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP works to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network that has helped millions.

USA Tech Guide
USA TechGuide is a web guide to wheelchairs, mobility scooters, and assistive technology choices. You can read and submit wheelchair reviews, mobility scooter reviews, wheelchair cushion reviews, standing device reviews, and search The TechGuide for all types of assistive equipment.

Walt Disney World - Cognitive Disabilities Guide
Walt Disney World Resort offers a host of services to help guests with cognitive disabilities—including those on the autism spectrum—maximize their resort experience. Several times on this page, you can click to download a longer PDF guide with more detail than the page itself contains.

 

Professional Websites

American Academy of Pediatrics (AAP)
The American Academy of Pediatrics is an organization of 62,000 pediatricians committed to the optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults

Abilities Expo
Abilities Expo is about bringing necessary products and services together under one roof for the community of people with disabilities, their families, caregivers, seniors and healthcare professionals. Now in six cities across the nation, each Abilities Expo offers three days of access to the latest technologies and resources for ALL disabilities, informative workshops on issues that most resonate with the Community and fun activities like adaptive sports, dance, assistive animal demos and more.

CanChild Centre for Childhood Disability Research
CanChild Centre for Childhood Disability Research is a research and educational centre located at McMaster University in Hamilton, Ontario, Canada. Their research is focused on improving the lives of children and youth with disabilities and their families.

Catalyst Center
The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs.

Cerebral Palsy Alliance
Cerebral Palsy Alliance is an Australian-based organisation that provides family-centred therapies, life skills programs, equipment and support for people living with cerebral palsy and their families. Cerebral Palsy Alliance operates from 55 sites throughout metropolitan, regional and rural NSW and the ACT.

Cerebral Palsy Australia
Cerebral Palsy Australia is the national peak body of organisations that work with people with cerebral palsy and people with similar disabilities and their carers.

Cerebral Palsy Foundation
The Cerebral Palsy Foundation is a not for profit 501(c)3 organization with the dual mission to maximize the potential and quality of life of people with Cerebral Palsy and their families and to reduce the prevalence and impact of Cerebral Palsy through funding cutting-edge research.

Cerebral Palsy Research Network
The Cerebral Palsy Research Network (CPRN) is a group of doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with CP. The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.

Cerebral Palsy Research Registry
Cerebral Palsy Research Registry (CPRR) is a multi-institutional collaborative effort whose primary mission is to improve our understanding of cerebral palsy. We believe that by working together, families and researchers can make a difference in the lives of people affected by cerebral palsy.

Childhood Disability LINK
A website linking information and new knowledge on childhood disability to service providers and families.

CP Daily Living
CP Daily Living is an educational resource website and Facebook page. CP Daily Living is designed to give families and caregivers dealing with CP a central place for practical information and resources within the context of an emotionally-supportive community.

European Academy of Childhood Disability (EACD)
The EACD is an academic association of professionals working with children with disability throughout Europe.

Family Voices
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Throughout our national grassroots network, we provide families resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

Family Center on Technology and Disability
The FCTD is a resource designed to support organizations and programs that work with families of children and youth with disabilities. We offer a range of information and services on the subject of assistive and instructional technologies.

Got Transition?
Got Transition? is a national resource focusing on a young adult's transition from pediatric to
adult health care, particularly as pertaining to youth with special health care needs.

International Parkinson and Movement Disorder Society
The International Parkinson and Movement Disorder Society (MDS) is a professional society of clinicians, scientists, and other healthcare professionals, who are interested in Parkinson's disease, related neurodegenerative and neurodevelopmental disorders, hyperkinetic movement disorders, and abnormalities in muscle tone and motor control.

International Society for Prosthetics and Orthotics
ISPO is a global multidisciplinary organization aiming to improve the quality of life for persons who may benefit from prosthetic, orthotic, mobility and assistive devices.

March of Dimes
The March of Dimes helps moms have full-term pregnancies and researches the problems that threaten the health of babies.

Reaching For The Stars

Rehabilitation Research and Training Center on Aging with Developmental Disabilities
For information about Rehabilitation research and training center on aging with developmental disabilities: lifespan health and function

United Cerebral Palsy (UCP)

Transition Tools - Find a Professional/Clinic by Specialty
Transition Resources

Adolescent Health Transition Project

American Academy of Pediatrics-Medical Home and Transitions

Betz, C.L., & Nehring, W.M. (2007). Promoting Health Care Transitions for Adolescents with Special Health Care Needs and Disabilities. Baltimore, MD: W.M. Brookes Publishing.

Bright Futures - Age-specific guidelines on best practices

CanChild Centre for Childhood Disability Research - Transition Toolkit for Children & Parents

CHAT Project (Health Care Transition Resources) - Guide & Tools for Health Care Providers, Youth & Families:

Clark, G.M., Patton, J.R. & Moulton, L.R. (2000). Informal Assessments for Transition Planning. Austin, Texas: Pro-Ed, Inc.

Envisioning My Future - A Young Person’s Guide to Health Care Transition 

FloridaHATS (Health & Transition Services)

Gillette Children’s Transition Clinic (Lifetime Specialty Healthcare)

Got Transition?- Health Care Transition Resources

Healthy and Ready to Work National Center - Tools, programs, links

Healthy Bodies Toolkit for Boys/Girls - A Parent’s Guide on Puberty for Boys/Girls with Disabilities

Muscular Dystrophy Association - Transitions Resource Center

National Center for Medical Home Implementation

National Healthcare Transition Center (Got Transition?)

PACER's National Parent Center on Transition and Employment

Puberty Education for Students with Special NeedsA Girl’s/Boy’s Guide to Growing Up and A Girl’s/Boy’s Guide to Puberty and Personal Safety

Spina Bifida Transition Preparation

Transition Toolkit for Youth with Disabilities

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