Wednesday June 29, 2022

Myhre Syndrome Foundation Research Roadmap

A rare syndrome like Myhre, often means you become the experts in your care, or the care of your loved one. Your voice is incredibly important, and we want to hear from you as we develop the Myhre Syndrome Foundation Research Roadmap.

The roadmap will detail the research priorities and give direction on where research funding should be targeted, having been collaboratively developed by patients, families, doctors, and researchers.

There are two important initiatives, you can get involved with right now.

Community Survey
We would love your feedback on what your research priorities are. It only takes a few minutes, and your answers will help shape the direction of research that we take. The survey is available in English, Spanish, German, French and Italian.

Focus Groups
Please join us at a live virtual meeting where an independent facilitator will discuss your concerns and needs for the future. Book your place now for 6 or 20 August, as numbers are limited.

Summer Seminars - Launch Next Week

The countdown is on, as we’re now just over a week away from the first content that will be released in this year’s Summer Seminar Series.

Myhre experts are bringing new content, including endocrine, brain and spine imaging, dermatology, plus updates from last year’s presentation with new data and findings.

All content is available on demand and with multi-language captions.

Thank You - Kathy Young

We want to say a huge thank you to co-founder Kathy Young who has recently taken a step back from MSF. Kathy has been involved with the Myhre community for many years after establishing a Myhre Syndrome Parent Support Group on Facebook. The need for a foundation became apparent and in 2019 that ambition was realized after an incredible amount of work and dedication.

Kathy was not only Vice-President but led the Scientific Committee and was instrumental in setting up the Professional Advisory Board and the Myhre Syndrome Patient Registry.

Kathy is passionate about research and finding answers for the Myhre community and her knowledge and expertise was evident at every interaction. She will be sorely missed but as an active part of the community it is not goodbye, which we are very thankful for.