"One of the main problems faced by rare disease patients is the difficulty of early access to diagnosis and appropriate treatment, difficulties that are aggravated by the great differences that exist between autonomous communities.

Therefore, one of the main challenges that AELMHU has set itself is to achieve the creation of regional funds to finance treatments for rare diseases, as this would ensure that all patients could receive the treatment they need in their area of residence, without having to travel.

This is an essential measure for those centres where the cost of orphan drugs can reach between 10% and 20% of the pharmacy budget".