Resources to share with your patients.

Tools that inform and empower.

In this new era of scientific discovery, your patients living with inherited retinal diseases (IRDs) may be curious about the science and potential of gene therapy research and genetic testing. Spark Therapeutics has created tools to help you meet their needs for education and support.

aSharedVision: Education, support, and connection.

aSharedVision provides a variety of resources for patients and their families with education about IRDs, gene therapy research, and genetic testing, plus stories of people from the IRD community. Be sure to tell your patients about the patient side of ASV and the Facebook page.

The Science of Gene Therapy: An overview for your patients.

This brief overview from Spark Therapeutics will help answer your patients’ questions about cells, chromosomes, and gene therapy. Download the brochure (PDF)

Genetic Testing for Retinal Diseases: A reference guide.

This guide answers common questions about genetic testing, including what it is, who should consider genetic testing, what it can tell you, and what testing involves. Download the brochure (PDF)

Helping to guide the conversation.

As gene therapy research provides increasing opportunities for your patients with IRDs, we’re arming you with information to address their questions.

Q. What is gene therapy?A. Gene therapy is an investigational approach to treat or prevent genetic disease. It manipulates cells by bringing genetic material into cells that are not working correctly or could work better.

Q. Is gene therapy a new kind of science?A. Gene therapy research is not new. Scientists have been investigating and evolving it for more than 50 years.

Q, How do I find out what caused my IRD?A. A genetic test may identify which gene is the cause of your vision impairment.

Q. What does genetic testing involve?A. The test involves providing a blood or saliva sample, which is sent to a genetic testing lab. It can take up to several months to receive the results. You may want to discuss the results with a specialist or genetic counselor to determine your next steps.

Additional patient resources.

aSharedVision supports patients with links to organizations that can help them learn more about genetics, inherited retinal diseases, and genetic testing.
Go to patient resources.

An artist with hearing and vision loss drives retinal research using a global online registry.

By sharing her information with retinal researchers, Dana hopes to help them find new ways to address inherited vision loss.

 
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