Rare Disease Day 2021

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patient’s lives.

About 1 in 12 people in Canada have a rare disease and there are over 7000 rare diseases. For the majority of rare diseases there is no cure and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

Click HERE to learn more about Rare Disease Day.

This year the Toronto Star is featuring Canada’s Rare Voices. Stories of rare strength, perseverance and hope from Canada’s rare disease communities can be read HERE.

We are excited to have aHUS highlighted as one of the stories. You can read about Gabriel’s story HERE.

The aHUS Alliance asked our global aHUS community to share details about “feeling better” after diagnosis. How long it took to “feel better” and what “feeling better” means to them in the hope that this information will be helpful to those who are newly diagnosed with aHUS.
There was an amazing turnout from 107 aHUS warriors from 21 different countries!  Please watch and share the video HERE to help us raise awareness about rare diseases and in particular aHUS.

The Canadian Organization for Rare Disorders is also organizing a virtual Rare Disease Day conference on March 9 &10, 2021. To participate in this conference please register here.

People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change. The Canadian government announced in 2019 that they were going to invest in the development of a National Strategy for High Cost Drugs for rare diseases. As Canada considers how best to create a national strategy on high-cost drugs for rare diseases, it is important that Canadians – especially patients, their families and their caregivers – have a voice in helping to shape it. They invite Canadians to share their ideas and views on what a national strategy could look like. This feedback will help inform the design of the strategy and ensure it helps patients get better access to the effective drugs they need. The patient’s voice is very crucial, so we highly recommend giving your thoughts and opinions.

To learn more about this process and to participate in the consultations, please visit the Health Canada website HERE

Together we can work on improving the lives of rare disease patients.  Alone we are rare, together we are strong!!