Our supporters
Our Ambassadors
Our ambassador programme enables the MVA Society to work with the wider rare disease community so we can learn from their expertise and experience.
Ambassadors help inform and support our projects, identify new opportunities & collaborations, expand our network and spread the word about MVA.
Communicating the lived experience of having a rare disease is fundamental to our 3 core goals – fundraising | research | awareness
Giovanni Monti
Giovanni has been a supporter of the MVA Society from its inception. Giovanni has vast experience in healthcare, having launched several healthcare innovations and facilitated longitudinal research programs in the U.S., UK and continental Europe. A father of two, Giovanni is acutely aware of how precarious health can be, and is committed to supporting research on rare and ultra-rare diseases.
Hicham Llaabi (Spain)
Father to his 2 amazing boys – Iyad and Amir – both diagnosed with MVA. Hicham was the first family we met and is actively helping with MVA research through the Vall d'Hebron Institute of Oncology (VHIO) in Barcelona.
Hannah Howard
Hannah leads and coordinates U.S. outreach efforts for the MVA Society, with a focus on identifying and connecting with patients, clinicians, and researchers involved in Mosaic Variegated Aneuploidy (MVA) syndrome. Driven by a passion for supporting others and advancing awareness within the rare disease community, she is committed to building meaningful connections that strengthen collaboration and support. Based in the United States, she provides on-the-ground support to help expand the MVA network and foster progress in research, patient engagement, and community building.
Mary Pope
Mary Pope is a student at the University of North Carolina at Chapel Hill studying Health Policy and Management and Business. She serves as the Head of Social Media for the MVA Society, where she helps expand the organization's outreach and engagement efforts. Having known George since he was a baby, she is grateful for the opportunity to support the MVA Society's mission and contribute to raising awareness. Through her role, she hopes to help share the stories and experiences of individuals and families affected by MVA.
Our partners
The MVA Society is extremely proud to partner with both Tanner Pharma Group and Bourne Partners. We share a common goal of improving patient lives by increasing access to medicines. TannerCares – the charity arm of Tanner Pharma – is an active supporter of the work we do, and for that we are extremely thankful. It’s a partnership that helps power us towards our aim of finding a treatment for MVA, and thus improving patient lives by increasing access (or in this case finding access) to a new treatment!
Umbrella RD Organisations
Ultra/RD Partners
Memberships
