Fund Header Image

Children's Genetic and Rare Disease Fund

About

Please email fund creator to add more foundations to this fund, together we can create an umbrella fund that raises awareness and support for rare & genetic conditions affecting many children around the world.

Your Donation Supports

Osteogenesis Imperfecta Foundation, Inc.

OI affects somewhere between 1 in 25000 and 1 in 50000 live births, thus classifying it as a rare condition. Children born with OI have one or more mutations in the genes that control bone formation, resulting in brittle bones that are prone to fracture. Patients are impacted to various degrees depending on the nature of the underlying genetic mutation. Some are subclinical and may never know they are affected while more severe cases may suffer hundreds of fractures during their life and depend on mobility aids in their daily lives.

There is no cure for OI, but recent advances with monoclonal antibodies and other advanced therapies have greatly improved the quality of life for those living with the condition. Clearly more research is needed and raising money for any rare condition is always difficult because so few people are impacted even when that impact is in many cases quite severe.

OI was the first condition added to this fund. Please email the fund creator joe.newman@gmail.com to add additional funds. Together we can create an umbrella fund that raises awareness and support for many rare & genetic conditions. In the United States, there are an estimated 28 million people living with different rare conditions. Research into rare conditions not only benefits those suffering from the condition, but also provides a corner case for gaining greater insight into related conditions that affect large swaths of the general population. In the case of OI, the most prevalent related condition is osteoporosis which affects many older adults.

Thank you!

Charcot-Marie-Tooth Association

Charcot–Marie–Tooth disease (CMT) is one of the hereditary motor and sensory neuropathies, a group of varied inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. Currently incurable, this disease is the most commonly inherited neurological disorder, and affects about one in 2,500 people

Cystic Fibrosis Foundation

Cystic Fibrosis is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. Cystic Fibrosis affects about one out of every 3,000 newborns.

Children's Genetic and Rare Disease Fund
3
Nonprofits
115
Supporters

Support this Fund

Health
Your donation supports the pool of 3 nonprofits

Fundraise for your cause. Create a Fund, invite people, and collect donations.

+ Start a Bright Fund