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Tell us what you think

As specialist centres have grown and developed over time it is now much easier to find accurate information and advice. Peer support is more readily available through social media including Facebook, Twitter, Instagram etc.,, FaceTime on mobile phones, Skype and other services where we can all talk together and see each other in real time. This communication can take place without the need to travel and depending upon the method used is often inexpensive.

We have for many years held annual conferences for patients. When conferences started twenty years ago it was more difficult for patients to find information and to stay in contact with each other; however we are aware that patients’ needs for information and support have changed over time.

In short, we are no longer sure that hosting a conference in a specific geographic location every year is the best way to help everyone.

However, what really matters to us is what you think; the views of patients themselves.

Please answer these three questions and tell us, most importantly, what you think.

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