Provides information about Fabry disease, support group, discussion page, information about research, links to resources, and more.

Provides information about Fabry disease, research and clinical trials information, funding programs, and more. See Recommended Schedule of Assessment at https://www.fabrydisease.org/images/ReferencePDFs/fabry-registry-schedule-of-assessments.pdf. Programs, include:

• Annual conference
• Family camp
• Personal support
• Research and educational information

Provides a camp for kids and teens ages 11 - 17 living with conditions of the bowel and bladders.

Five nights of camp at a college campus for an experience that promotes independence, self-esteem, learning, friendship and fun. Each year the Youth Rally host roughly 150 campers from all over the US and beyond. Campers and counselors alike live with an array of conditions affecting their bowel and/or bladder systems. A nursing team assists campers as needed.

Serves children ages 17 and under, who have been diagnosed with a serious illness, and their families. Campers come from the 11-state region of Colorado, Wyoming, Montana, New Mexico, Kansas, Nebraska, North and South Dakota, Oklahoma, Utah, and Texas. No cost.

Provides traditional camp experiences for children with serious illnesses and their families. Provides week-long camp sessions, several family camps and some special sessions where siblings ages 17 and under are invited to join. See website for up-to-date list of camp sessions.

People of short stature and their families; a diagnosis of dwarfism or form of short stature.

Provides support and information to people of short stature and their families.

Services Include:

• Peer, parent, and medical support at the chapter, regional and national level
• Discounted rates at the National conference; advocacy
• College scholarships and support
• Adoption and conference attendance grants
• Friendship and connections
• Referrals to medical care by dwarfism specialists

Entire northeast United States

Provided free air transportation for medical and humanitarian purposes.

Provides information and resources about dyslexia, including handbooks, annual conference, scholarships for teachers and for parents to attend conference, listing of other grants, and provider lists by state.

Ages 10-17 who have limb loss or limb differences.

Provides a free annual camp experience for youth ages 10-17 with limb loss/limb difference.

At-risk families with children under the age of 5.

Builds strong communities, thriving families and children who are healthy, safe and ready to learn by matching parents and caregivers with trained professionals who make regular personal home visits during a child’s earliest years in life, from prenatal through kindergarten. Local program locator available on website. 

Medical Aid Request form on website.

Dedicated to funding in-hospital life saving medical treatment and surgeries for those who do not have medical insurance, and for which no other financial resources are available.

Aims to cure headache, and to end its pain and suffering, the NHF has collected the most comprehensive information on headache and migraine on their website. Head Wise magazine provides in depth articles on advances in treatment and understanding of these complex diseases. NHF also funds headache research.

Child under the age of 18 years at time of placement with their service dog. Must have a physical disability, psychological disability, or on the autism spectrum; be enrolled in a qualified training program prior to applying and complete an application.

Provides service dog scholarships for children with special health care needs. 

Provides free, expert, and confidential guidance on workplace accommodations and disability employment issues. For both employers and employees, Accommodation Information by Disability: A to Z; and Accommodation Ideas by Disability, Limitation, Occupation, Product or Service, and Topic.

Consultants offer one-on-one guidance on workplace accommodations, the Americans with Disabilities Act (ADA) and related legislation, and self-employment and entrepreneurship options for people with disabilities.

For patients or caregivers, advocacy groups, health care providers, and supporters.

Offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Includes: Transition of Care, Infantile Spasms Awareness, Respite Care, Sudden Unexpected Death in Epilepsy, Grants and Scholarships, Webinars

National, web-based locator for services

SpineScreen app is free. Scoliosis is most commonly diagnosed between 10-15 years of age.

Provides free app developed by the experts at Shriners Hospitals for Children, that enables parents to perform a preliminary spine check on their child. The SpineScreen app detects abnormal curves when the phone is moved along a child’s back, giving parents a quick, informal way to regularly monitor their child’s spines. Parents can also schedule annual reminders, learn the signs of scoliosis and explore treatment options. The app is only a tool and results should be followed up by a doctor’s examination for an official diagnosis of scoliosis.
[https://bit.ly/Apple_SpineScreen App Store]
[https://bit.ly/GP_SpineScreen Google Play]

mobile app

ADvancing States represents the nation’s 56 state and territorial agencies on aging and disabilities and long-term services and supports directors. The mission of ADvancing States is to design, improve, and sustain state systems delivering long-term services and supports for older adults, people with disabilities, and their caregivers.

Formerly: National Association of States United for Aging and Disabilities

Individuals with Down syndrome, their families and the community

Provides free educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community, through a replicable playhouse model. Multiple locations throughout the U.S.

A national alliance of attorneys providing special needs planning for individuals with disabilities and their families. Provides a tool to locate alliance members by state.

Services Include:

• Maximizing and preserving benefits
• Protecting assets
• Assuring lifelong care

Provides assistance on a case by case basis. Financial assistance for military families. Disaster relief, life-saving blood, training and certification, volunteers, international services, nursing and health.

Students (grades K-12)

Provides educational scholarships to children from ages 5-18 to assist with tuition for school from Kindergarten to 12th grade.