Organisation rare diseases
7 important questions on Organisation rare diseases
How many live with rare diseases?
How many percentage?
How many onset in childhood?
How many genetic?
4%
70%
72%
What are the difficulties that go with rare diseases?
- Social
- Daily activities (5 van 10)
- Cognitive = understanding and learning (4 van 10)
- Motor functions
- Participation restrictions
Access to healthcare is complex and hard to manage. Why?
- Bad communication between care givers
- A lot of different visits
- Less well informed about their rights
- Time consuming
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What is the European policy? What zijn de drie belangrijke documenten?
- Commission communication: 2008. Europe's challenges
- Council recommendation on an action in the field for rare diseases
- EUCERD = european commission experrt group rare diseases.
In 2016 the recommendations of the expert group were agreed on.
- Integrating it in social policy
Interdiciplinaire, holistic, person centered, participated care provision. (article 4)
- Integrating in national system: assessing person's level of functioning (article 8)
What are important milestones for the European policies?
- Highlighting research
- Solidarity
- Recognition as a public health priority => make a national plan
- European reference networks (ERN) opzetten => collective knowledge; common goals are improving diagnostics and treatment, high-quality health care
- Cross-border health care
How is the organisation in the Netherlands?
- Je wilt een expertise centrum oprichten dus dit vraag je aan bij de VWS; dit gebeurt elke 5 jaar (kan sinds 2016 (toen is ook die 'recommendations integration RD in social policies' aanvaard)
- Expertise centers for rare diseases (2016) (Expertise Centrum voor Zeldzame Aandoeningen ECZA)
- Dan kan je je aanmelden om bij een Europees reference network te gaan horen (per rare diseaese)
How many expertise centra does A UMC have? And why is it important to have a center of exptertise?
You need to be recognized by the center of expertise to apply for funding.
The question on the page originate from the summary of the following study material:
- A unique study and practice tool
- Never study anything twice again
- Get the grades you hope for
- 100% sure, 100% understanding
