Several Endo-ERN members are ambassadors for rare disease at the European Society for Paediatric Endocrinology Rare Disease Advisory Committee. They recently sent a letter to Endo-ERN outlining their priorities and planned activities:

• Review the current activities of ESPE (committee by committee) in the field of rare diseases and identify opportunities for development among ESPE committees, as well as other organizations involved in the field of rare diseases

Provide recommendations to the ESPE Council on the following:

• Fostering collaborations with all ERNs, including Endo-ERN and ERN-BOND
• Focusing on opportunities for knowledge exchange in Europe, as well as beyond Europe, which would include activities, such as webinars, guideline development, research projects
• Collaboration with international rare disease patient organizations
• The role and remit of ESPE representatives in ERNs and other rare disease organizations
• Improving awareness and engaging researchers and clinicians with rare-disease registries. Specifically, the RDAC should advise how ESPE should act as a stakeholder int eh EuRRECa project
• Promoting rare disease research through its existing activites

Read the full letter