World Lipodystrophy Day 31 March 2020
People with Lipodystrophies, family members and entities working in the field of Lipodystrophies apply:
1. The creation of Reference Units at a global level in the integral attention to patients with lipodystrophy. To support the Reference Units in Lipodystrophies located in Hospitals (Center, Service and Reference Unit) at a global level for these pathologies.
2. Lipodystrophies should be considered as a social and health priority by the different public and private institutions.
3. The establishment of a map of experts/professionals in lipodystrophies worldwide
4. The establishment of concrete measures to ensure equitable access to life-saving drugs for families with lipodystrophies, in particular human recombinant leptin.
5. The promotion of research on lipodystrophies through the Centers, Services and Units of
Reference.
6. To increase the recognition of Lipodystrophy through education initiatives of the medical community and among the general public, with the objective of early diagnosis of these patients.
7. Measures to ensure care for people with lipodystrophies that require transfer to another Member State.
8. To urge the government of the nation to invest up to 3% of the Gross Domestic Product in healthy scientific research.
9. To generate a collaborative action where all the agents involved - public sector, private sector, citizens, academia, industry and patient associations - come together and through which sponsorship is encouraged by means of an incentive system that makes the sustainability and viability of research projects in rare diseases possible at a national level.
world.
10. Support the registration promoted by the European Consortium of Lipodystrophies, and the European network of clinical and basic groups as well as other groups working in the field of lipodystrophies worldwide.
