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Rare disease consultation to launch |
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Plans for a European Commission consultation on the future of the treatment of rare diseases have been unveiled at a conference in Lisbon, Portugal.
The European Organisation for Rare Diseases (Eurodis), which organised the event to discuss topics concerning the millions of people living with unusual medical conditions, said that it had helped contribute to the creation of a new European Union Communication designed to help countries form policies to deal with rare diseases.
Among the points highlighted in the Communication is the importance of ensuring that all patients have access to orphan drugs, with Eurodis announcing that a consultation on this and other issues will be launched.
The organisation's website quoted board secretary general Christel Nourissier and president Terkel Andersen as saying: "This phase is very important because it provides each stakeholder with an opportunity to contribute and it will have an impact on the future of the rare disease community in Europe."
A previously poll released by the organisation revealed that currently, 69 per cent of people with rare diseases report having been rejected by healthcare professionals because of the complexity of their condition.
Masters can source orphan drugs for patients with rare disease through its named patient supply programme, which can deliver medicines to patients around the world. |