News via Rare Disease UK

We've got the following stories for you in this newsletter:

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EUROPLAN Report is now available online

The report of the EUROPLAN Conference held in London in June is now available to view online.

RDUK hosted a UK Europlan National Conference to examine the content of the UK Strategy for Rare Diseases and the national plans for implementation and look at areas which have been omitted or could be improved.

EUROPLAN is part of the EUCERD Joint Action: Working for Rare Diseases – the work is led by EURORDIS (the European Organisation for Rare Diseases) and the Italian Institute of Health at a European level and by alliances at national level. EURORDIS has recommended a number of topics which reflect the EU Council Recommendations including research into rare diseases.

View the EUROPLAN Report here

Is your patient group involved in providing clinical services?

Are you aware of any examples of rare disease patient organisations being directly involved in supporting, delivering or coordinating NHS clinic services for their patient population? We are keen to gather information on these types of service arrangements to inform the 'Hidden Costs of Rare Diseases' project work. Please contact Amy if you know of any examples.

EURORDIS Photo Contest 2014

EURORDIS recently launched their annual Photo Contest, inviting everyone with an interest in rare diseases to share their most beautiful and original images. Besides offering participants the chance to win some great prizes, the EURORDIS Photo Contest is an opportunity to communicate visually the many diverse facets of living with a rare disease.

Even those who are not shutterbugs can participate in the EURORDIS Photo Contest by voting for their favourite photograph(s)!
This year, 3 prizes (Apple iPad Air) will be awarded to 3 different winners.
  • Public Vote: Awarded to the photo that receives the most votes. This is your chance to raise awareness for rare diseases by asking your friends to share your photo and vote for it
  • Expert's Choice: Selected by professional fashion photographer Rick Guidotti. Rick’s motto: celebrating the richness and beauty of human diversity.
  • EURORDIS Favourite: Chosen by the EURORDIS Staff.
EURORDIS would like to reach the widest audience possible in order to raise awareness for the many diverse facets of living with a rare disease. In this spirit, they would be very grateful if you could promote the Photo Contest through your communication supports (newsletters, websites, Facebook, Twitter…). They can provide you all the visuals and texts you need.

Find out more.

The Fifth International Symposium of the Lowe Syndrome Trust ‘Molecular and Clinical Advances in Lowe Syndrome’

The Royal Society, Pall Mall, London December 12th 2014
You are invited to attend the 2014 Lowe Syndrome Trust Symposium, which will bring together UK and international research groups (funded by the Lowe Syndrome Trust), the Lowe Syndrome Scientific Advisory Board and other national and international medical experts and scientists in the field of Lowe syndrome research. The programme includes guest lectures by Professor Juan Carlos Izpisua Belmonte (The Salk Institute, USA and Professor Bruce Conklin (University of California, San Francisco, USA) “ Engineering induced pluripotent stem (iPS) cells to model genetic disease and potential therapeutic applications”). There will also be a series of clinical and basic science talks from leading international clinicians and scientists, including Professor Robert Nussbaum (University of California, San Francisco, USA) and Professor Pietro De Camilli (Yale University, USA).

The day will end with a poster display session during which members of several research teams will be available for discussion of their projects. Please contact Lowe Syndrome Trust to attend.