Vall d'Hebron, through the International Conference of Rare Diseases and Orphan Drugs (ICORD), supports the Resolution on "Addressing the Challenges of People Living with a Rare Disease and their Families", adopted by the 193 member states of the United Nations last December 16th at its 76th General Assembly. ICORD is dedicated to improve the well-being of rare disease patients and their families through better knowledge, research, care, information, education and awareness.

Resolution "Addressing the Challenges of People Living with a Rare Disease and their Families"

The adopted resolution aims to empower the global rare disease community and drive the development of national strategies and plans in this field.

The main points are:

1. Inclusion and participation in Society of Persons living with a Rare Disease and their Families.
2. Ensure Universal and equitable access to quality health services without financial hardship.
3. Promote national strategies and plans.
4. Integrate rare diseases into UN agencies, programmes and priorities.
5.  Publish regular reports to monitor progress on the implementation of the resolution.

ICORD, world reference organization on rare diseases

ICORD is an umbrella organization of clinicians, research staff, representatives of the pharmaceutical industry and patient associations involved in rare diseases. The strategic objective of ICORD is to promote and disseminate knowledge, treatments and research in rare diseases worldwide, especially in areas with little developed or inexperienced organizational models for the global approach to these pathologies.

Since last April, Dr. Joan Comella, director of Vall d'Hebron Research, is the treasurer of ICORD. In addition, Dr. Mireia del Toro, principal investigator of the Pediatric Neurology research group at Vall d'Hebron Research, associate doctor of the Pediatric Neurology Service and President of the Commission of Minority Diseases at Vall d'Hebron University Hospital, joined the board of directors.