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Europese aanbevelingen sociale zorg voor zeldzame aandoeningen


Deze week publiceerde de Europese Expert Groep op het terrein van zeldzame aandoeningen, aanbevelingen betreffende de sociale zorg voor zeldzame aandoeningen.

Recommendations to Support the Integration of Rare Diseases into Social Services and Social Policies

Providing holistic care to people living with Rare Diseases (RD) is particularly challenging because:

  • Expertise and knowledge on RD and their consequences are scarce and difficult to access;
  • RD are often chronic, highly complex, severely disabling and frequently affect life expectancy1;
  • No specific treatment is currently available for most RD and existing treatments are not always able to minimise all the complex impairments generated by the disease;
  • A high percentage of people with a RD are affected by motor, sensorineural or intellectual impairments, which can occur simultaneously;
  • Even when they are not associated with a disability, RD will in many cases influence the person’s health condition and impact on daily life in a disabling way.

This recommendation focuses specifically on those RD that generate complex impairments. The combination of rarity, complexity and lack of effective treatment creates huge obstacles to the provision of holistic care and in many cases significant medical, psychological and social needs remain unmet.
Link to report

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