A Shared Vision: Resources for Inherited Retinal Diseases

diagram of gene therapy in the retina

https://bit.ly/shared-vision-wb

Spark Therapeutics has launched a new website, aSharedVision.com, designed to help patients, caregivers and health care professionals better understand inherited retinal diseases (IRDs) and the importance of genetic testing.

What are IRDs? Here are a few:

  • LCA: Leber’s Congenital Amaurosis
  • RP: Retinitis Pigmentosa
  • CRD: Cone-Rod Dystrophy
  • JMD: Juvenile Macular Degeneration
  • CHM: Choroideremia

aSharedVision features information about IRDs, a simple overview of the science behind the emerging field of gene therapy and guidance to help families work with health care professionals to seek a genetic diagnosis.

The site also contains profiles of individuals and families living with IRDs (this is my favorite part), and will continuously feature new content developed by community members. If you want to share your story, let them know!

If you have any questions about what you see on the site, just ask! Spark is very responsive to patients. Patients and family members can contact patients@sparktx.com for help.

 


Related Posts

boy sitting at table with an iPad

Eye Conditions and Syndromes, iPad Apps and Accessibility

Successful iPad Apps for Children with CVI

A collection of successful iPad apps for kids diagnosed with CVI as recommended by a TVI and CVI specialist.

laughing woman

Eye Conditions and Syndromes

Why I laughed when my daughter lost her eye

Gwen tells funny stories about raising her daughter Ivey who has bilateral anophthalmia. Gwen says it's important for us to learn to laugh at ourselves and our lives and teach...

Ivan smiling

Eye Conditions and Syndromes

Leber’s Congenital Amaurosis (LCA) FAQ

All your questions about Leber's Congenital Amaurosis (LCA) are answered here in one place. Don't see your question? Then just send us an email and we'll get right on it!