Gene People- Partnership Networks

The Gene People Partnership Network fosters collaboration among charities and patient groups supporting those affected by genetic conditions, including diseases related to ACTA2 mutations. The network allows the sharing of resources and knowledge to improve the quality of life for individuals with rare genetic disorders like MSMDS.

Through its collaborative efforts, the Partnership Network raises awareness of genetic diseases, supports research initiatives, and promotes stronger connections between patient communities and healthcare professionals.

Share4Rare

Share4Rare is a global platform where patients, caregivers, clinicians, and researchers come together to make a difference in rare diseases, including genetic conditions like ACTA2 mutation disorders. The platform empowers individuals through shared knowledge and experience, collective intelligence, and social innovation.

By facilitating the donation of clinical data and connecting rare disease communities, Share4Rare supports research into conditions like MSMDS, helping to overcome the challenges associated with the limited number of patients and lack of research opportunities.

Global Genes-Global Advocacy Alliance

Global Genes is dedicated to improving the lives of the 400 million people worldwide affected by rare diseases, including those caused by ACTA2 mutations. . As one of the largest patient communities in the world, they stand together to cultivate equity, diversity, and inclusion in rare disease research, ensuring that all perspectives are represented.

Through global collaborations and educational initiatives, Global Genes promotes research into genetic conditions such as MSMDS, working to improve diagnosis, care, and treatment for rare disease patients across diverse communities.