Foundations and Resources for Coats’ Disease Families

The Jack McGovern Coats’ Disease Foundation was founded in 2006 with a specific focus and mission: to raise funds in support of ongoing research initiatives to one day find the cause and cure of Coats’ Disease. That has manifested into connecting doctors to one another by way of our regular medical conferences and through direct funding of research (like our partnership with Genentech). While we pride ourselves on being a network of support and hub for information for our community, we can’t do it all.

That’s where these fantastic organizations come in.

Explore this list to find an organization that fits your needs. We are all in this together — to fight back against Coats’ Disease and other retinal diseases that could take away sight for thousands of people around the world.

1. Know The Glow is dedicated to the awareness of glow-related childhood eye diseases. The mission of their foundation is to globally eliminate preventable childhood blindness by educating the general public and medical community on how to identify “The Glow” through simple flash photography. They seek to support and promote cure-related research in the pediatric ophthalmology community to ultimately find treatments and cures to the diseases related to all childhood blindness, including Coats’ Disease.

2. Half Helen Foundation offers affordable, high-quality vision and hearing screenings to help identify and prevent visual and auditory impairments in underserved communities. In addition to the screening services, they provide each child with a one-page report that details his or her test results and any abnormal conditions found. If children need further care after being screened, they will refer them to local doctors and specialists. Children can receive full eye exams and corrective wear for free from our partner organization, Kids Vision for Life.

3. NORD (National Organization for Rare Disorders) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. NORD spearheads National Rare Disease Day each year, an initiative the JMCDF proudly supports. Follow them and subscribe to their newsletters to find out about events, awareness initiatives and other campaigns in your area.

4. RareConnect – A EURODIS Initiative was created by EURORDIS (European Rare Disease Organisation) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. The Coats Disease community on this hub is a great portal to connect with families from all over the globe, especially in Europe.

5. Association of Families and People with Coats in Spain (AFECE)

Is Spanish your primary language? Do you live in Spain and want to connect with a local organization? The AFECE is a non-profit organization working to improve the quality of life of people with the Coats Disease.

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