Did we reach our goal?

Monday March 15, 2021

Rare Disease Day 2021 - $29,178 raised!

We set out to raise $28,000 by 28 February in recognition of Rare Disease Day 2021 and the Myhre Syndrome community delivered!

Your donations will be used to fund Myhre Syndrome research and we can’t thank you enough.

If you missed out on this campaign, don’t worry, it’s never too late to make a difference. Could we finish the month reaching the tantalizingly close $30,000?

DONATE HERE

The CoRDS Myhre Patient Registry - we need you

Filling out forms can seem endless, espically when a rare disorder diagnosis is made but as Barbara Spell explains, this is one of the most important documents you might ever fill out.

Read the article here

Covid-19: Vaccine Update from the PAB

The Myhre Syndrome Foundation is supported by a Professional Advisory Board (PAB), experts from around the world who are involved in the research and treatment of individuals living with Myhre Syndrome.

The PAB have provided a statement on the Covid-19 vaccine, giving guidance and answers to many frequently asked questions, but the core guidelines still apply.

Wash your hands, keep your distance and wear a mask.

Sophie & Rafael's Story

Sophie Pottier and her family live in France and shared their story with us via a translation service. Rafael is ten years old and Sophie takes us though their path to a diagnosis.