ChildMuscleWeakness.org
A website of the National Task Force for Early Identification of Childhood Neuromuscular Disorders. The site provides information and tools to help parents and healthcare professionals identify the early signs of muscle weakness and neuromuscular disease.
Rare Share
A unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.
Caregiver Action Network (CAN)
The nation's leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (formerly the National Family Caregivers Association) is a nonprofit organization providing education, peer support, and resources to family caregivers across the United States free of charge.
Center for Parent Information & Resources
A central resource of information and products for the community of Parent Training Information Centers and the Community Parent Resource Centers so they can focus their efforts on serving families of children with disabilities.
Cyberbullying Research Center
Dedicated to providing up-to-date information about the nature, extent, causes, and consequences of cyberbullying, it is intended to be a resource for parents, educators, law enforcement officers, counselors, and others who work with youth. You will find facts, figures, and detailed stories from those who have been directly affected by online aggression. In addition, the site includes numerous resources to help you prevent and respond to cyberbullying incidents.
Family Caregiver Alliance (FCA)
A community-based nonprofit organization that aims to illuminate caregivers' daily challenges to better the lives of caregivers nationally, provide them the assistance they need, and champion their cause through education, services, research, and advocacy. FCA offers programs at national, state, and local levels to support and sustain caregivers.
Family Voices
Family Voices aims to achieve family-centered care for all children and youth with special healthcare needs and/or disabilities. Throughout their national grassroots network, they 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.
Parent to Parent USA
Programs offering parent-to-parent support as a core resource for families with children who have a special health care need, disability, or mental health issue. Through a one-to-one “match,” experienced support parents provide emotional support to families and assist them in finding information and resources.
Sibling Support Project
A national program dedicated to the lifelong and ever-changing concerns of the millions of brothers and sisters of people with special health, developmental and mental health concerns.
Stopbullying.gov
A website providing information from various government agencies on what bullying is, what cyberbullying is, who is at risk, and how you can prevent and respond to bullying.
The Bully Project
Inspired by the award-winning film BULLY, this social action campaign includes tools for educators to spark meaningful conversations about bullying.
The Parent Advocacy Center for Educational Rights (PACER Center)
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth to young adults. Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities. PACER's National Bullying Prevention Center provides resources designed to benefit all students, including those with disabilities.
The Washington State Fathers Network (WSFN)
The Washington State Fathers Network (WSFN) connects men with other dads, resources, information, and education, plus opportunities for “all family” celebrations. Focus is on assisting fathers as they become more competent and compassionate caregivers for their children with special needs. WSFN is the only regional program in the US and Canada fully devoted to fathers of children with special health care needs and developmental disabilities. Since 1986 it has opened new doors of hope for thousands of men and their families, providing them with support and resources to be effective, nurturing dads.
Dan and DMD: A Children’s Book on Duchenne Muscular Dystrophy by Joseph Yasmeh
This book tells the story of Dan, an upbeat boy who was born with Duchenne. It can help parents talk to their children about Duchenne and give friends and peers a better understanding of the condition.
Route 79, The Duchenne Scholarship Program
This Sarepta-sponsored program provides scholarships to help people living with Duchenne achieve their post-high-school educational goals.
Rare Lessons
This program aims to promote rare disease education in the K-12 classroom. It grants monetary awards to educators for winning lesson plans that promote learning about rare diseases and inclusion for people living with them.
Duchenne Map
Provides Duchenne healthcare, clinical trial, and research information in one site to help people with Duchenne structure their own healthcare journey.
ClinicalTrials.gov
An online database of publicly and privately supported clinical studies conducted around the world. ClinicalTrials.gov currently lists hundreds of thousands of studies with locations in all 50 states and in 191 countries.
