UK Europlan Conference and Workshop What do you think should be included in a strategy for rare diseases in the UK?

Currently, as many of you know, the UK and many other European have no strategic approach to delivering the best course of treatment and support for all patients with rare conditions. This can result in many patients being left to find their own way through the maze of services and information that is available without any clear guidance or support. Where possible health professionals support families, but in many cases due to constraints on time and funding, adequate support and information is not provided.

In 2009 Health Ministers from each EU member state signed a European Council Recommendation that called on Member States to develop and implement strategies for the treatment and care of people living with rare diseases. Rare Disease UK is working to ensure that the UK implements a strategy to support the 3.5 million people in the UK affected by a rare condition.

As part of this work, we would like to invite you to the UK Europlan Conference and Workshop. Europlan is a three year project which aims to provide recommendations, best practices, case studies and indicators to help each EU Member State develop their strategy for rare diseases. Over 25 countries are taking part and the findings will go back to the European Commission as part of their role in overseeing Member States’ actions in improving services for rare diseases.

The findings will also inform RDUK’s work in developing a report on why we need a strategy for rare diseases in the UK and what should be included in an effective strategy.

Along with Genetic Alliance UK, we are holding a one day conference and workshop on 16th November 2010 in Manchester. You can find the agenda here.

EUROPLAN is an opportunity for patients and for those working in the field of rare conditions to input into the policy debate around the commissioning, organising and coordinating of services in the UK. Whatever your background we would like to hear your experiences and thoughts and learn and build on the good practice that is already in existence for some rare conditions.

If you would like to reserve a place, please contact Melissa Hillier – melissa@raredisease.org.uk or 020 7704 3141. Attendance is free but please do book in advance as places are limited.