How the EUCERD Joint Action supported initiatives on Rare Diseases

Area of Science:

• Public Health
• European Health Policy
• Rare Disease Research

Background:

• European Commission (EC) Joint Actions have significantly benefited individuals with rare diseases (RD).
• Previous EC Health Programmes aimed to prioritize RD.
• The need for a centralized RD information portal was identified.

Purpose of the Study:

• To highlight the work of the EUCERD Joint Action (EJA) and Orphanet Joint Action.
• To raise awareness of policies established for the rare disease community.
• To showcase the EC's commitment to rare disease initiatives.

Main Methods:

• Review of activities undertaken by the EUCERD Joint Action (2012-2015).
• Analysis of the Orphanet Joint Action's role in creating a common RD portal.
• Examination of how these actions supported EC policy development and committees.

Main Results:

• The EUCERD Joint Action fostered policy definition and experience exchange among Member States.
• Orphanet Joint Action addressed the need for a unified, up-to-date RD information resource.
• Both actions provided crucial support to EC policy development in the rare disease sector.

Conclusions:

• Joint Actions are effective EC initiatives for rare diseases, enhancing awareness and benefits.
• These actions have been instrumental in shaping European policy and support for the rare disease community.
• Continued focus on RD as a priority within EC Health Programmes is essential.