Asociación AELIP

For this, the Association along with the administrations, promote the creation of reference centers, patient records and the access in equity and equality to treatments.

Reading of manifesto on the World Lipodystrophy Day is another of the actions promoted by our Association where some aspects are required, such as:

1. The creation of reference units worldwide in the comprehensive care for patients with lipodystrophies.

2. Lipodystrophies should be considered as a social and health priority by 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 medications for families with Lipodystrophies, in particular the recombinant human leptin.

5. The impulse to the investigation in Lipodystrophies, through the Centers, Services and Reference Units.

6. Measures that guarantee the attention to people with Lipodystrophies that require to move to another Member State.

7. Urge the government of the nation to invest up to 3% of the Gross Domestic Product in health scientific research.

8. Generate a collaborative action where all the agents involved could join - public sector, the private sector, citizenship, the academic world, industry and patient associations - and through which the patronage is favored by an incentive system that makes possible the sustainability and viability of research projects in Rare Diseases (RD).

9. Institutional support for the European Consortium of Lipodystrophies, the European network of clinical and basic groups that works in the field of lipodystrophies.

You can download the Manifesto in Spanish and English by clicking on the PDFs that appear below.