NEWS

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AELMHU participated in the XIII Congress on Rare Diseases organised by D'Genes and UCAM

D'Genes and the Universidad Católica San Antonio de Murcia (UCAM) organised the XIII Rare Diseases Congress from 24-26 November, which was attended virtually by some 900 people from around twenty countries, according to the university in a press release.

The event, which was attended by representatives of AELMHU, had the theme "New demands, new challenges" and was held for the first time in an online format due to the health crisis.

The congress kicked off with testimonies from rare disease patients and relatives and opening speeches from authorities and organisers.

The second day focused on aspects such as diagnosis, advances and future challenges in research into rare diseases and good practices and the humanisation of these pathologies. In parallel, a symposium on Alagille's disease was held.

The final day addressed resources for individuals and patient associations, best practices in education, as well as several workshops dedicated to topics such as communication, fundraising and resources or the ketogenic diet in refractory epilepsy.