The ultimate goals of Myhre syndrome-related research is multifaceted. There is not only a need to understand the symptoms and how the symptoms present (the pathology of the disease as well as the phenotype or physical appearance of the disease), but there is also a need to develop a specialized treatment plan, consisting of a cure or therapeutic
Read moreFirst Data from Myhre Syndrome Registry
Today we have published the first set of data from the Myhre Syndrome Foundation Patient Registry. To date, 87 participants have filled out the questionnaire providing a medical history for themselves or on behalf of someone with Myhre.
Read moreMyhre Syndrome Foundation awards $150,000 in research grants
Myhre Syndrome Foundation has awarded $150,000 in research grants to two awardees that will advance knowledge of Myhre syndrome.
Read moreMSF Community supports Rare Disease Day 2022
The Myhre community shared their stories in the lead up to Rare Disease Day – inspiring and poignant and we thank you all for your contributions to help raise awareness and understanding.
Read moreBoston Myhre Clinic - Patti's Experience
Patti Schultz, Myhre Syndrome Foundation Board Member visited MassGeneral Myhre Clinic in Boston in November, 2021, and was happy to share everything she learnt.
Read moreMyhre Syndrome Foundation launches International Research Grant Program
The Myhre Syndrome Foundation has today launched the first International Research Grant Program to support the advancement of knowledge of Myhre syndrome.
Read moreRare Disorder & Syndrome Clinics – “Everything (well, almost) you wanted to know, and have been asking”
This article takes you through what it takes to create a clinic, what they can and can’t do and the options available to access the clinic if it’s not in your home nation.
Read more“Everything about genetics is so fascinating and the passion for the Myhre community is contagious”
Eleanor Scimone, the new Clinical Research Assistant, at the Massachusetts General Hospital Myhre Clinic in Boston, talks to us about her new role and her love for medicine.
Read moreThe first MSF Virtual Conference - What a weekend!
After the last 15 months of isolation, the first International Myhre Syndrome Foundation Virtual Conference held July 10-11, 2021 was just what our Myhre community needed. For two days, over 150 Myhre families, researchers and healthcare providers from 19 countries connected through cyberspace to hear 21 speakers on topics as varied as genetic causes, caregiver stress and the unique cardiovascular features of the syndrome.
Read moreAnna Young chosen for Special Olympics 2022
Congratulations to Anna Young, 23, for being chosen to represent the Virginia Delegation at the Special Olympics USA Games 2022 in Orlando, Florida!
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