Celebrating Partnership with NFED and the XLHED Community

EspeRare is deeply honoured to receive the 2026 Philanthropy Partnership Award from the US-based National Foundation for Ectodermal Dysplasias (NFED). 

This recognition is particularly meaningful as it comes from an organisation that directly support the families affected by X-linked hypohidrotic ectodermal dysplasia (XLHED), a community that has been central to the ER-004 journey. 

When EspeRare stepped in to rescue ER-004 and bring it back into active development, NFED became a key partner in shaping a patient-centred development pathway. Together, we have worked to ensure that the perspectives of patients and families are meaningfully embedded throughout clinical development. 

Developing a potential therapy for a rare disease is a long and demanding journey. It brings moments of hope and scientific progress, but also challenges, uncertainty, and the need for sustained collaboration. Throughout this journey, NFED’s openness, trust, and continued engagement have helped shape the programme in a meaningful way. 

Although the award is presented to EspeRare, this recognition also reflects the broader efforts of the XLHED community. We extend our deepest thanks to NFED, to the patient representatives and community members whose perspectives have helped inform this work, to the investigators, and to everyone who has contributed to this collective effort. We are also pleased to recognise Pierre Fabre Laboratories, EspeRare’s partner for the co-development and commercialisation of ER-004, as part of this shared journey. 

EspeRare is grateful for this recognition and for NFED’s partnership. It is a powerful reminder that meaningful therapeutic innovation begins by listening to patient communities and their representatives. 

More about NFED

More about Pierre Fabre Laboratories

More about ER-004