World Rare Disease Day 2019

We want to thank everyone who actively participated in this unforgettable, full of support and engaging day. We hope you will join in abundance to celebrate together with us again next year.

The goal is to adopt new behaviors and attitudes towards the needs of blind people, help with early diagnosis and access to future treatments that are currently under development for LCA10.

Patients affected by rare diseases are important because currently for most disease cases there are no cures. Many young children go undiagnosed due to the limited accessibility to specialized care as well as costs of genetic testing. Rare Disease Day has been established to improve knowledge amongst the general public and voice concerns of major decision-makers to address the needs of those living with rare diseases.

February 28th, 2019 is celebrating the World Day for People with Rare Diseases, usually genetic. I encourage you to take part!  Why? Because shutting down eyes, opens up minds. We organize an event related to Leber’s Congenital Amaurosis blindness – a competition for the artistic work with blindfolded eyes. If you would like to join the fun, I warmly invite you to do so. In the family circle, education through play. “From children to children” learning through understanding. While learning about challenges in the diagnosis of this rare form of childhood blindness reflect how you feel when you do not see much?

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Blindness is a SERIOUS health condition and needs to be understood. BE SAFE! Be responsible.

Do something “in the dark”, blindfolded: dress a doll, draw a picture, eat dinner with a handkerchief covering your eyes and capture the memory (!) by taking pictures or a video (with the Rare Disease Day logo). Share with us as a family, class, school, university, hospital or a company at https://www.rarediseaseday.org/article/rare-disease-day-2019 or https://rarediseases.org/rare-disease-day/

Time until February! Have fun.

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