On the occasion of Rare Disease Day, celebrated each year on February 29, the University Hospital (CHU) continues its commitment to raising awareness and supporting patients and their families. For the fifth consecutive year, it is organizing its Rare Disease Association Forum at Estaing Hospital, an event dedicated to providing information, fostering dialogue, and highlighting the associations involved in this cause.
With nearly 7,000 identified rare diseases—80% of which are genetic—the patient journey remains a major challenge: it takes an average of a year and a half to establish a diagnosis, leading to diagnostic and therapeutic delays that heavily impact patient care.
The University Hospital (CHU), which includes six constitutive reference centers, three resource and competence centers, and 52 competence centers, covers 22 out of 23 national rare disease healthcare networks. This expertise makes the institution a center of excellence in the management of these complex conditions.
The Rare Disease Association Forum will be held on Friday, February 27, from 9:30 a.m. to 5:00 p.m., in the main hall of the Estaing Hospital site. No fewer than 20 patient associations will be present to answer questions, share their expertise, and support those concerned.
An essential event to learn more, exchange, and advance the recognition and care of rare diseases.
