Newly diagnosed?

A Race Against Blindness: funding sight-saving research for children with Bardet-Biedl syndrome and inherited retinal diseases

Understand the diagnosis

Find a retina specialist who sees inherited retinal diseases

Get genetic testing, with counseling

Connect with families who have been here

Explore clinical trials

Newly Diagnosed with an Inherited Retinal Disease: Where to Start

Just told you or your child has an inherited retinal disease? Five steps most families take next, questions for your appointment, and patient and parent guides for your condition.

Education Hub › Newly diagnosed

If you or your child was just told you have an inherited retinal disease, start here. This page lays out the steps most families take next, in order, with guides written for your specific condition.

The path most families take

Five steps, in the order they usually happen. You don't have to do them all this week.

Worth doing early, too

Side roads off the main path. None of them are urgent today.

Join a patient registry The Foundation Fighting Blindness My Retina Tracker Registry lets researchers and trial sponsors find people with your diagnosis. About the registry (opens in a new tab)

Look after your own mind A diagnosis is a loss, and grief is a normal response. Talking with a counselor, or with other families, is part of care, not a detour from it. Support resources

Guides written for your condition

For every condition in our database there is a patient guide and a parent guide written for the first weeks after diagnosis. Find yours.

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Questions to bring to your next appointment

Write the answers down. You'll want them for steps 3 and 5.

Our family started here too

A Race Against Blindness was started by a family after their son Luke was diagnosed with Bardet-Biedl syndrome, which causes retinitis pigmentosa. The first weeks were a blur of questions with no clear place to start. This page is the one we wish we'd had. Everything on it is free, and the research we fund is so the next family has more options than we did.