Rare Disease Day 2017

Rare Disease Day is right around the corner.  The world will join together on February 28, 2017 to raise awareness for rare diseases.  The theme for the upcoming Rare Disease Day is “Research”.

Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On 28 February 2017, the tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases.  Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases. Rare Disease Day 2017 is also an opportunity to recognize the crucial role that patients play in research.

Everyone is invited to participate in a video project through the aHUS Alliance. Send a photo, where you are from, and a question you would like researched. Go to the link below for more details: 


The alliance welcomes everyone from our global community to join in this project.

So send in:

–       Photo

–       Name and where you are from

–       Your Rare Disease Day aHUS question.

You can email your submission to Jeff Schmidt at jeffschmidt.ahusadvocateusa@gmail.com

Submissions are due by the end of Feb. 16, 2017 to allow time to put this together, but the earlier you can turn in your entry the better!

If you have any questions please email us at info@ahuscanada.org