Patient Communities
We recognize the expertise and lived experiences of people living with rare conditions, and how much we can learn from them. At Mereo, we are committed to working together with rare disease community representatives to better understand the impact of their condition, and explore how we can contribute to improved care and outcomes for their communities.
Mereo receives the Black Pearl Award for Patient Engagement
In February 2025, Mereo and our partner Ultragenyx were the proud recipients of the EURORDIS Black Pearl Company Award for Patient Engagement. This prestigious award recognizes companies’ commitment to serving and empowering people living with rare conditions through meaningful collaboration.
We are honored to receive this recognition, and we would like to thank both EURORDIS and the communities that we work with for their continued guidance, encouragement, and support.
Mereo and the osteogenesis imperfecta community
Osteogenesis imperfecta (OI) is a rare genetic bone condition that affects children and adults. Listening and learning from the communities we are here to serve is central to the way we do things at Mereo. Find out about how we collaborate with the OI community groups, including how we support awareness-raising efforts on Wishbone Day.
Mereo and the Alpha-1 community
Alpha-1 Antitrypsin Deficiency (AATD), often referred to as Alpha-1, is a rare genetic condition that results in a deficiency of a protein called Alpha-1 antitrypsin. Mereo has worked closely with the Alpha-1 community leadership to design and roll-out our development program. We are guided by the Alpha-1 community to ensure that the perspectives and experiences of Alphas are included in our work in the most appropriate and inclusive way.
Rare Disease Day
Rare Disease Day is a global annual event dedicated, since 2008, to raising awareness about rare conditions and the challenges and achievements of those living with them. Mereo takes the opportunity of Rare Disease Day to organize special events and to invite members of the rare disease community to join us in our headquarters in London. These events allow us all to learn more about the experiences and opinions of people living with rare conditions, as well as the healthcare professionals who diagnose, treat and care for them.
Rare Disease Day 2025
This year’s theme, ‘more than you can imagine’, highlights the resilience, strength and individuality of people living with rare diseases. To mark the occasion, Mereo hosted an internal event to spend time with youth members from the osteogenesis imperfecta (OI) community. During this session, we listened to their perspectives on growing up with OI, their plans for the future, and their personal engagement in the OI community.
Rare Disease Day 2024
Rare diseases often present unique challenges: for the people who have them, for their families and for the healthcare professionals striving to provide accurate diagnoses and effective care. To recognize Rare Disease Day 2024, we hosted an event for our entire team to spend time with leaders in the Alpha-1 community and to learn about what impact Alpha-1 lung disease has on people’s everyday lives.
Ingunn Westerheim, President, Osteogenesis Imperfecta Federation Europe (OIFE)Thank you to Mereo for inviting us to talk about OI from the perspective of people who have OI themselves, and to provide advice from the patient organization perspective. We are thrilled that you are interested in hearing the patients’ voices and that you want to work with us in such a constructive way.
