The Child Neurology Foundation (CNF) connects partners from all areas of the child neurology community so those navigating diagnosis, management, and care have ongoing support from those dedicated to finding treatments and cures. Parents, care partners, families, and people living with neurological conditions can find information, education, and one-on-one peer support when it’s needed most.
Umbrella Organizations
Our Odyssey
Our Odyssey connects young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.
FasterCures: Patients Count
For too long, patients’ unmet medical needs have been an afterthought, rather than a starting point, for developing medical products that address their priorities and deliver value to the health-care system. FasterCures aims to improve health by driving adoption of methods by which patients’ perspectives shape processes for discovering, developing and delivering medical products and services.
The Rare Disease Diversity Coalition
The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.
ANGEL AID
ANGEL AID sources research, relief, and inspiration for mothers of children with rare diseases. Join their community to connect with other Rare Mothers, learn the tools of self-care, and be listened to without judgement.
The International Pain Foundation (iPain)
iPain is devoted to advancing access and quality care in order to help people suffering from a variety of muscular skeletal, inflammatory, neurological, emotional, degenerative and often rare conditions that involve chronic pain through education, awareness, and access to care projects.
Siblings with a Mission
Siblings with a Mission serves and supports siblings and families of individuals with complex health conditions and developmental disabilities.
Remember the Girls
Remember the Girls’ mission is to raise awareness of the many issues facing female carriers of x-linked recessive genetic disorders; to provide a forum for x-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry x-linked disorders.
Parent to Parent USA
Parent to Parent USA provides emotional & informational support for families of children who have special needs.
Danny’s Dose
The mission of Danny’s Dose is to raise awareness about the current gap in emergency treatment for those with special medical needs, change the current protocols, help educate emergency service personnel, and educate affected families in proper emergency planning and protection.
Rare New England (RNE)
Rare New England’s mission is to bring together New England patients, families and providers touched by rare and complex disorders. The organization offers educational opportunities, creates awareness of available resources, and builds foundations for support to improve patient quality of life.
EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources, and opportunities to make patient voices heard.
