The Spanish Association of Orphan and Ultra Orphan Drugs (AELMHU) has participated in the process of contributions to the Prior Public Consultation on the Draft Order creating the Observatory of Rare Diseases of the Community of Madrid and establishing its composition, organization and operation.
From AELMHU, we welcome the fact that the Government of the Community of Madrid maintains and strengthens its commitment to rare diseases, betting on initiatives such as the implementation of this Observatory of Rare Diseases.
We also consider it very opportune to continue to deepen new developments and proposals that give visibility to less frequent pathologies and their challenges, as well as to address new proposals for improvement, such as the recognition of the economic and social value of pharmaceutical research in this field, equity in access to treatments throughout Spain, the streamlining of bureaucratic processes or the improvement of the innovation evaluation process, among many others.
For this reason, we wanted to participate in this Public Consultation process, with some recommendations:
- Firstly, and within the framework of the objectives of planning and coordination of activities and decisions related to the Plan for the Improvement of Health Care for People with Rare Diseases, as well as in the development, monitoring and evaluation of its priorities, we believe it is essential that the new Observatory for Rare Diseases include the orphan drug industry in its consultative bodies and working groups for decision making.
- Secondly, we understand that the new Observatory of Rare Diseases of the Community of Madrid should study and promote all those improvements in the streamlining of the processes that have been undertaken during the Covid 19 pandemic in the region, as a learning process to be transferred to high impact situations such as the case of the MM.HH.
- We also propose to take advantage of all the benefits of new technological tools and their application in health to carry out more and better analyses that can be shared within the Regional Observatory, in order to make diagnostic progress visible and improve care and knowledge of rare diseases.
- Finally, we also urge the Regional Government that the new Observatory should have a working group on new lines of research in the field of rare diseases (e.g., gene and cell therapy), in which patients, professionals, public decision-makers and industry can share new experiences and results.
If you would like to know the details of all these proposals, please consult the complete Recommendations document.
