Education and Awareness

WORKING GROUP:

Our working group is dedicated to sharing informative, helpful information about MEF2C Related Disorders with clinicians, researchers, families and the public.

Meets XYZ day of the week every month.

Who we interact with:

  • Medical Experts and Researchers: We collaborate with key opinion leaders and researchers to ensure that educational materials reflect the latest evidence and guidelines.

  • Educational Institutions: We partner with universities and schools for outreach or continuing education programs.

  • Healthcare Organizations: We partner with hospitals, medical societies, and professional organizations to disseminate information about our group and this disease.

  • Patient Advocacy Groups: Work with other advocacy organizations to amplify awareness efforts on a larger scale.

What we do:

  • Educational Program Development: Create and deliver educational content for both healthcare providers and the public, including webinars, conferences, and training programs.

  • Public Speaking and Advocacy: We talk to the public, which includes delivering presentations at conferences, symposia, and to various stakeholders (e.g., policymakers, healthcare professionals).

  • Content Creation: We write educational content for brochures, videos, websites, and other materials that explain the disease, its impact, and available resources.

  • Community Outreach: We engage in outreach activities to raise awareness, including school programs, local community events, or public health campaigns.

  • Research Translation: We translate complex scientific data into accessible information for non-expert audiences, especially patients and families.

Meet the Team

Volunteer your time and talent.

Does this sound like you?

  • You’re always reading the latest MEF2C research

  • You check out rare disease webinars and events

  • You wonder why your geneticist doesn’t have a pamphlet about MEF2C related disorders

  • You often think about MEF2C science, interlinked symptoms, and what makes our kids unique

  • You’ve got a few hours to give every month, and want to find treatments and support people with MEF2C Related Disorders

If it does, please consider volunteering on the Education and Awareness working group.

Interested? Shoot us an email: