Today (February 20.) International Ectodermal Dysplasias Awareness Day, Pierre Fabre Laboratories and the EspeRare Foundation will receive the EURORDIS Company Award for Patient Engagement 2024, at the EURORDIS Black Pearl Award Ceremony to be held in Brussels.
The EURORDIS Awards acknowledge the exceptional contributions of patients' organisations, volunteers, scientists, companies, media, and policy makers toward reducing the impact of rare diseases on people's lives. This distinction recognises Pierre Fabre and the EspeRare Foundation's collaboration with the Ectodermal Dysplasia (ED) patient community.
Indeed, they have been working in synergy from the early stage and all along treatment development, in order to bring what could become the first prenatal therapy for X-linked hypohidrotic ectodermal dysplasia (XLHED). Through building mutual trust with affected families and engaging patient's groups as equal partners and co-contributors in their clinical program, Pierre Fabre and the EspeRare Foundation are advancing the potential to treat, before birth, a rare genetic disease.
The ED patient community had already greatly contributed to advancing knowledge in XLHED, prior to EspeRare's involvement. When the Foundation EspeRare took over in 2018, the ED patient groups were the first to be on-boarded. Since then, they have been central to the project, adding significant value to each step of the development of the investigational treatment.
They have been instrumental in enhancing both companies' understanding of what it truly means to live with XLHED, and in identifying the community's needs. "Engaging with patients has the potential to significantly improve a study design and address the unmet needs and priorities,” said Ulrike HOLZER, Board member and Founder of the Ectodermal Dysplasia International Network.
“On behalf of the Ectodermal Dysplasia International Network and the entire global ED community I am proud that we are collaborating with both EspeRare and Pierre Fabre in this groundbreaking trial." Caroline KANT, Executive Director of the EspeRare Foundation, added: "Pierre Fabre's commitment to this groundbreaking program is rooted in our mutual dedication to the patient community.
“Receiving the EURORDIS award is a testament to our teams' relentless efforts and a tribute to the Ectodermal Dysplasia community's invaluable commitment. This honor reflects our shared journey towards potentially delivering a pioneering treatment to families affected by X-linked Ectodermal Dysplasia."
Nuria PEREZ CULLELL, Head of the Medical Consumer and Patient Department at Pierre Fabre, commented: "From a general point of view, this award is great recognition of the Pierre FABRE active collaboration with the associations with which we work hand in hand to ensure that the needs and concerns of patients are fully considered. Concretely, it honours our effective cooperation with the EspeRare Foundation and encourages us to continue our efforts for the success of the EDELIFE study which aims to prove the effectiveness of a promising prenatal therapy for the XLHED patients”.
