Aniridia Day: June 21, 2018
What is it?
An international Day for individuals and organisations to raise awareness of this rare genetic condition by:
* hold events for patients and families to meet
* increase public awareness of aniridia,
* recruit new volunteers
When is it?
Aniridia Day is the same date as the solstice (a property of how high the sun is in the sky). The brightness and position of the sun significantly affect the lives of aniridic patients.
Aniridia Day and the solstice are celebrated on June 21st.
Who can take part?
Everyone! We want Aniridia Day to be a truly international event with people in all countries taking part and using it as the basis for activities.
Whether you have aniridia or know someone with aniridia, please get involved. Spread the word, organise activities in your community or donate monies to your national cause. We are stronger when we work together!
International Rare Disease Day: February 28th
Championed in Canada by Canadian Organization for Rare Disorders (CORD) and Rare Disease Foundation (RDF), this day is to raise awareness on Canada's gap in progress for research and treatment options for patients living with a rare health condition.
Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe. People with a rare disorder in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change. One in 12 Canadians has a rare disorder. Approximately, 3 million Canadians and their families face a debilitating disease that severely impacts their lives.
About 80% of rare diseases are caused by genetic changes.
Follow event and activities in your community via their websites: