Tuesday February 16, 2021

Watch our video!

To celebrate Rare Disease Day on February 28, 2021 we created a video of our global Myhre community. We wanted to shout loudly and proudly about the resilient and inspirational Myhre warriors. We echo the mantra of Rare Disease Day - Rare is Many, Rare is Strong, Rare is Proud. Please share our video amongst your community, helping us increase awareness and understanding.

Fundraising update

We set a big challenge at the beginning of the year to raise $28,000 by Rare Disease Day and our community certainly stepped up! We’ve so far raised $18,453 - a huge achievement. There are still 12 days to go, so if you can help us reach our target, it’s easy to donate directly on our website.

Help money can’t buy…

We need to bring the world’s attention to the fight our Myhre warriors face every day. So, what can you do?

- Follow our social channels, Facebook, LinkedIn, Instagram & ‘like’ our posts!
- Encourage friends & family to sign-up to our monthly newsletters
- Attend our Myhre Syndrome Virtual Conference on July 10 & 11, 2021 (registration opens May 1, 2021)

With a voice we will get noticed. As our audience broadens and our community grows, we will find other Myhre warriors out there and get the attention of a wider medical and genetic community.

Sharing stories

We love featuring stories from the Myhre community, we learn so much from sharing knowledge and experiences. Catch up on our latest blog below.