Information/Newsletter from Rare Disease UK

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

Save the Date - EUROPLAN II Conference, Tuesday 24 June
Scottish Implementation Plan: Consultation meeting
Consultation Event for patients, families and patient organisation representatives to respond to Draft Rare Disease Plan for Wales
Member’s news
Please get in touch by replying to this email if you have any comments or suggestions about this newsletter, or to let us know about an upcoming story.

Save the Date - EUROPLAN II Conference, Tuesday 24 June
Rare Disease UK will be hosting the second EUROPLAN Conference on Tuesday 24th June at NCVO, Society Building, 8 All Saints Street, London N1 9RL.

In November 2010, RDUK hosted a conference as part of the EUROPLAN project, which looked at developing common standards to inform the development of national plans across the EU.

This project has now entered its second phase and we are holding another conference which is one of around 20 taking place across Europe.

RDUK will use the conference as an opportunity 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 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. The conference is open to all stakeholders who are interested in rare diseases and we hope to include the involvement of officials from the UK’s health departments.

A report outlining the findings of the conference will be produced and the findings disseminated to all attendees and Rare Disease UK members.

For more information on the EUROPLAN project, please follow the link:

Attendance is free and registration will open soon. All members will be notified by email, in the meantime please save the date in your diary.

Scottish Implementation Plan: Consultation meeting

The Scottish Implementation Plan is currently in development and the Scottish Government, in conjunction with our parent charity Genetic Alliance UK, would like to invite you to attend one of two scheduled consultation meetings to discuss the proposed Implementation Plan. The meetings will take place at the Quaker Meeting House, 7 Victoria Terrace, Edinburgh, EH1 2JL on the following dates:

• Tuesday 6th May (12.30pm-14.00pm)
• Monday 12th May (1.30pm - 15.00pm)

The meetings will include a presentation from the Scottish Government and an opportunity for questions, comment and discussion. This is likely to be the final opportunity to influence the Scottish Implementation Plan.

For more information and if you would like to attend, please contact our development officer in Scotland, Natalie Frankish: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■

Consultation Event for patients, families and patient organisation representatives to respond to Draft Rare Disease Plan for Wales

Patients, family members and patient organisations representatives who want to feed in their views of the Draft Welsh Implementation Plan for Rare Diseases are invited to come along to a consultation event that will be taking place in collaboration with the Welsh Government on 14th May.

The consultation event will take place at at 1pm on 14th May at the Cochrane Building, University Hospital Wales Campus, Heath Park, Cardiff.

There will a presentation from Welsh Government about the plan followed by group discussions with plenty of opportunity to have your say.

If you are unable to attend but would like to share your views with the Welsh Government, please send your comments to our development officer in Wales, Emma Hughes before the 10th May on the email below.

For further information about the event or to register to attend, please send your emails to: ■■■■■■■■■■■■■■■■■■■■■■■■■■■.

Member’s news

Thyroid Eye Disease Event , Friday 16 - Saturday 17 May 2014

Patients with thyroid eye disease, their friends and family are invited to play an important part in a unique public event that is bringing more than 50 European and UK experts in the field of Thyroid Eye Disease (TED) to Newcastle on 16th of May. The event will update the audience on recent advances, will explore future research priorities and will provide an opportunity for patients to meet the experts.

Participants must register in advance. Registration is free. For further information and to register please click here.

Rare Disease UK @rarediseaseUK
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