CASTRES, France and GENEVA, Feb. 15, 2024 /PRNewswire/ — On 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. 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.” said Ulrike HOLZER, Board member and Founder of the Ectodermal Dysplasia International Network.
“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.” added Caroline KANT, Executive Director of the EspeRare Foundation.
“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 honors 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” commented Nuria PEREZ CULLELL, Head of the Medical Consumer and Patient Department at Pierre Fabre.
About XLHED
XLHED is a severe genetic disorder that affects the structure of the ectoderm, the most exterior part of the three primary germ layers formed during early embryonic life, from which the skin and its appendages are derived. XLHED is caused by mutations in EDA, a gene that encodes an important developmental signaling protein, EDA1. The absence of functional EDA1 in the ectoderm results in abnormal development of the skin, sweat glands, sebaceous glands, hair, oral cavity, and respiratory mucosal glands.
For more information about the ongoing clinical study, please visit https://edelifeclinicaltrial.com/
About Pierre Fabre Laboratories
Pierre Fabre Laboratories is the world’s 2nd largest dermo-cosmetics company and the 2nd largest private French pharmaceutical group. Its portfolio includes numerous medical franchises and international brands such as Pierre Fabre Oncologie, Pierre Fabre Dermatologie, Eau Thermale Avène, Ducray, Klorane, René Furterer, A-Derma, Même Cosmetics, Naturactive, Elgydium, Inava and Arthrodont.
In 2022, Pierre Fabre Laboratories recorded turnover of €2.7 billion, 69% of which was generated internationally in 120 countries, and invested more than €170 million in R&D.
Historically based in the Occitanie region, and manufacturing 90% of its products in France, Pierre Fabre Laboratories employs nearly 10,000 people worldwide.
Pierre Fabre Laboratories is 86% owned by the Pierre Fabre Foundation, a recognized public interest foundation since 1999, and secondarily by its employees through an employee shareholding plan.
In 2022, its CSR approach was assessed as “Exemplary” by the independent organization AFNOR Certification for the Engagé RSE (Committed to CSR) label (ISO 26000 standard for sustainable development).
For more information, please visit www.pierre-fabre.com
About the EspeRare foundation
EspeRare is a Swiss non-profit organization founded in 2013 that is committed to improve the lives of children with life-threatening rare diseases. EspeRare addresses the unmet medical needs of these children by uncovering the potential of existing treatments. EspeRare’s innovative model combines pharmaceutical know-how with philanthropic, public and private investments to develop and bring to life these discontinued therapies. With its unique patient-centred approach to drug development, EspeRare engages the patient community at each step of the process, with the intent of giving children and their families fair access to these therapies and a new hope for the future.
For more information, please visit www.esperare.org
CONTACTS PRESSE :
PIERRE FABRE
ESPERARE
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