Information / Newsletter from Rare Disease UK

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Are you a patient or carer with a rare condition? Do have experience of transitioning from adult to elderly care? We need your help!

Transition has been identified as a major issue that affects many rare diseases. RDUK are looking for patients, parents and carers from across the UK who would be willing to be interviewed by the RDUK team about their experience of transition from adult to elderly care. The report will look at successes and failings of transition in rare diseases and seeks to address these, consider solutions and promote good practice.

Interviews with patients (or their parent/carer) will take place either by phone or in person. Patient experiences will then be compiled into a report and with a picture of the patient (if they wish to include their photo). Examples of similar reports RDUK have done can be accessed here:

The transition report is part of a wider project by Rare Disease UK, which will be published in November to mark the one year anniversary of the publication of the UK Strategy for Rare Diseases. Patients who have taken part in the report will be invited to attend the launch in the Houses of Parliament; a bursary will be available to cover travel costs to London. Please reply to this email to get in touch.

Rare Disease UK receives high commendation at the Communiqué Awards

We are delighted to announce that earlier this month Rare Disease UK secured the Highly Commended award in the Payers/Policymakers category at the Communiqué awards.

This high commendation was received for RDUK's policy work; parliamentary awareness-raising events and contact campaigns to parliamentarians; our contribution to the development of the UK Strategy for Rare Diseases; and our work in bringing together the rare disease community through the RDUK membership.

We are pleased to have received this award, however our work is not yet done. We will continue to work alongside the four governments and their respective health services, helping them to deliver the 51 commitments set out in the UK Strategy for Rare Diseases. We will provide the evidence-based knowledge on all aspects of the UK Strategy to help them deliver lasting change that will directly improve health outcomes for patients and families.

We would also like to thank Say Communications for making it possible for us to attend the Communiqué awards ceremony.

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Other News: Transformative gift to create the world’s first centre for research into rare diseases in children

Plans to open the world’s first centre dedicated to paediatric research into rare diseases at Great Ormond Street Hospital (GOSH) are to become a reality thanks to a £60 million gift from Her Highness Sheikha Fatima bint Mubarak.

The centre is a partnership between GOSH, University College London (UCL) and the Great Ormond Street Hospital Children's Charity. The building, whose site is adjacent to the hospital and the UCL Institute Child Health, is set to bring hundreds of clinicians and researchers together where they will see patients and access state-of-the-art laboratory facilities under one roof.