SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Help Cystinosis Research At The UK Conference

Chairman, Roy Forsyth, explains how you can help with Cystinosis Research if you are attending the Cystinosis UK Conference in Manchester on 24th September 2011…

Hello all,

We are delighted so many of you will be joining us at the upcoming patient conference in Manchester!

At the meeting there will be an opportunity to participate in face-to-face research with the company developing Delayed Release Cysteamine, Raptor Pharmaceuticals.

Raptor is keen to learn the needs of the UK Cystinosis community.

If you are a patient or care-giver interested in sharing your experiences and contributing to this research, you are invited to participate in a confidential face-to-face interview at the conference. Interviews will take about 30 minutes and can be scheduled during your free time at the Manchester Conference Centre and Hotel.

Interviews will be kept completely confidential.

Interviews can be scheduled before or after Saturday’s conference programme or any time on Sunday, 25 September. Raptor will pay for a hotel room on the Saturday night (24 September) for those who schedule their interview for the Sunday. Raptor will cover this cost when interviews are scheduled, confirmed with their research organization, and completed.

If you would like to participate, email CystinosisResearch@compasshc.com or call +44 (20) 33000127.

Please reach out to schedule an interview in advance as research slots are limited.

By participating, you will be contributing to the development of future support programmes for families affected by Cystinosis. To thank those who participate in this research, a donation of £25 will be made to the Cystinosis Foundation UK for each interview, increasing funds for Cystinosis research and support.

Thank you for supporting this research.

Yours sincerely

Roy Forsyth
Chairman
Cystinosis Foundation UK

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