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ENE-000411/2019Answer given by Mr Andriukaitison behalf of the European Commission(13.3.2019)Lipoedema is a recognized medical condition. The tenth version of the World Health Organization (WHO) International Classification of Diseases (ICD) refers to it as ‘localized adiposity including fat pad (E65)’ in section ‘obesity and other hyperalimentation (E65-E68)’.Rare diseases is a priority area for the Commission, as is improving patient access to diagnosis, information and care. Definition, codification and inventory of rare diseases are among the key elements of the European work on rare diseases.Under the Orphanet rare disease nomenclature lipoedema is classified under code 77243 as a rare genetic disease as well as a rare skin disease. The RDCODE project that started in January, aims to promote the use of Orphanet nomenclature in routine coding systems. Both Orphanet and RDCODE are supported via the EU Health Programme.The EU Platform for Rare Diseases Registries hosted by the Joint Research Centre, launched on 28 February 2019 will allow the creation of critical knowledge for a given rare disease, enabling research and supporting patients, health care providers and policy-makers.Pursuant to Article 168(7) of the Treaty on the Functioning of the European Union, EU action in the field of public health must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care, including the definition of entitlements. The Commission refers the Honourable Member to Articles 5(b) and 6(4) of the Cross-border Healthcare Directive whereby National Contact Points shall provide patients on request with information on their rights and entitlements. ................
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