Adult Mito.

Patients Satisfaction UK Mito Centres of Excellence.

CMDN was contacted by phone by Mr Rob Camp, EURODIS, to assist and help in facilitating/promote the survey below, the basis of the survey, is to reach out to all patients, parents, carers family members, who have had experince at the Newcastle Mitchondrial Centre of Excellence, run by Prof. Doug Turbull. Who is fully aware of ths commissioned survey funded by the European Comission for Health Sciences.

To better improve mitochondrial services in the UK, establish, improve communication with Patients and Professionals involved in mitochondrial medicine.

We would encourage anyone, you know or are aware of who may benefit from this survey to please complete, the results of which will be put to Prof. Turnbull and colleagues at a planned meeting at the Newcastle Mitochondrial Centre.

Any further questions please do not hesitate to contact me Paul Preston: info@cmdn.org.uk thank you.

To whom it may concern,

We are writing to you in reference to the European Organisation for Rare Diseases (EURORDIS) Study on Centres of Expertise, about if patients’ needs and expectations are being met at their medical centres. We would like to facilitate a consultation of the European rare disease community (the UK Mitochondrial Disease Network community in this case) in order to improve patient care throughout Europe. Dr. Edmund Jessop has informed us that you may be interested and we would like to thank you.

In brief, the EURORDIS Study is part of a 3-year project (2008-2011) funded by the DG SANCO Public Health Programme called ‘POLKA’ which is being carried out by EURORDIS and partner organisations.

The Study will be carried out in the UK, France and Denmark. The first part will be done via an online questionnaire. The second round will be a face to face meeting with the participants which will be held at Newcastle University Hospital via Prof. Doug M Turnbull. The survey is planned to begin in mid-March and the face-to-face-meeting will take place in May/June. I attach the link to the survey here so you can have an idea of what we are looking for – https://www.surveymonkey.com/s/patientsandrepresentatives

We would like to have as many participants as possible answer the online survey, and there the patient can decide if they are interested in also attending a face to face group meeting of about half a day which would include approximately 12 patients and 8 health care professionals. If you have specific recommendations of people to attend the face to face meeting, we would gladly consider them. For your help in this matter, we would like to offer one person from your organisation to attend the annual Eurordis Membership meeting, this year in Amsterdam, from 12-15 May.

To resume, can you kindly help us:

• recruit patients to fill out the online questionnaire, of whom we need 12 to
• take part in the face-to-face meeting at Newcastle University Hospital in May?

We would like to thank you for your support in advance and look forward to your response to confirm your participation. Please feel free to contact me if you require any further details or clarifications. I will also give you a call soon.

Best regards,

Rob Camp