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 patients’ lives. The world will join together on 29 February to raise awareness for rare diseases like atypical Hemolytic Uremic Syndrome (aHUS). Click here to learn more about Rare Disease Day.
There are many ways that you can help raise awareness for rare diseases. Here are some suggestions to participate:
Through the global aHUS Alliance we invite those who want to participate in this year’s Rare Disease Day video, to send your photo along with where you are from, and what advancements your “20/20” vision would like to see in the year 2020. Your vision does not need to be unique, just something you really would like to see this year.
- Name and where you are from
- Your Rare Disease Day aHUS “20/20” vision (up to 40 words).
You can email your submission to Jeff Schmidt at email@example.com
Submissions are due by the end of 2/17/2020 to allow time to put the video together, but please don’t wait! Send in your submissions now!
For more info visit: https://www.ahusallianceaction.org/rare-disease-day-2020/
The final video project can be seen HERE:
The Canadian Organization for Rare Disorders is hosting a Breakfast Reception in Toronto at Queen’s Park in celebration of International Rare Disease Day on March 3, 2020. An opportunity for patients, families and advocates to meet with Members of Provincial Parliament and other supporters. For more information and to register please visit :https://www.raredisorders.ca/wa_3693647/
If you have any questions or would like to let us know about any rare disease activities in your area please contact us at firstname.lastname@example.org