We are excited to share a survey developed in collaboration with the MLC Clinical Consortium and Alliance MLC. This survey aims to identify the symptoms of MLC that have the greatest impact on daily life for families and individuals living with the condition.
Why is this important? Understanding which symptoms are the most burdensome and important to MLC families will help researchers focus on developing treatments that would be most impactful to improve quality of life.
What do MLC Families need to do:
- Complete the survey by May 31, 2025 – it just takes a few minutes and asks about common signs and symptoms of MLC that impact your lives the most.
- Share with other MLC families – the more responses we collect, the stronger our data will be in guiding future therapies.
This is an opportunity for our community to play an active role in the research for therapy development. The link to the survey can be found below in all the available languages:
English, German, French, Italian, Dutch, Portuguese, Spanish, Turkish
Thank you for participating in this effort!