Rare Disease Committee
Chairs: Simona Glasberg and Alberto Pereira
- To develop a specific policy of ESE towards rare endocrine and metabolic diseases.
- To foster collaboration, cooperation and coordination of activities in the area of rare diseases between ESE and Endo-ERN (including EURRECA) that are relevant to the activities of ESE, such as:
- To assess educational needs and find collaborative solutions for rare disease-relevant educational platforms for healthcare professionals and patients, focusing on improving QoL, transition from pediatric to adult care and the prevention of, and long-term management of complications and co-morbidities.
- Clinical guidelines.
- Endo-ERN activities at the annual European Congress of Endocrinology through representation on the ECE POC.
- To develop collaborations with other ERNS and specialist societies operating in the rare-endocrine disease and metabolic landscape, ensuring optimal outcome for collective efforts at the institutional level.
- To raise awareness of research and clinical trials into rare endocrine and metabolic diseases and support efforts to ensure this area receives appropriate focus from funding bodies.
- To promote and facilitate cross-border care and multidisciplinary consultation, supporting ERN’s efforts in ensuring access to appropriate diagnostic tools and improved remote support through telemedical innovations.
- To improve awareness and engagement of researchers and clinicians with rare-diseases registries for the benefit of patient outcomes.
- To provide a platform for collaboration with Patient Advocacy Groups ensuring ESE and ERNs continue to support Patient-led and patient-centered initiatives in healthcare.
- To raise public awareness of rare-diseases through collaboration with European institutions and relevant national and international organisations.
- To manage the allocation of budget in relation to rare diseases activity.
- Simona Glasberg , Israel, co-terminous with office (ESE Executive Committee, 2019–2023).
- Alberto Pereira (2019-2023), Endo-ERN Representative.
- Krystallenia Alexandraki, Greece, (2020-2024).
- Maralyn Druce, UK, (2020-2024).
- Diego Ferone, Italy, (2020-2024).
- Maria Luisa Brandi, Italy (2020-2024).
- Felipe Casanueva, Spain (2020-2024).
- Faisal Ahmed, UK, 2020-2024), (PI of EuRRECa).
- Gudmundur Johannsson, Sweden, (2020-2024).
- Nicole Reisch, Germany, (2020-2024).
- Frederic Castinetti, France, (2020-2024).
- One representative to be confirmed (paediatric endocrinologist).
- Andrea Giustina, Italy, co-terminous with office (President, 2019-2021).
- Martin Reincke, Germany, co-terminous with office (President-Elect, 2019-2021).
- Felix Beuschlein, Germany, co-terminous with office (Science Committee Chair, 2017-2021).
- Robin Peeters, Netherlands, co-terminous with office (Clinical Committee Chair, 2021-2023).
- Camilla Schalin-Jäntti, Finland, co-terminous with office (Education Committee Chair, 2016-2020).