The AMEND Annual Patient Information Day was held in person on Saturday 16th October, and welcomed people with a variety of different rare endocrine diseases and cancer, including ACC.
It was a wonderful day of friendship and positivity, not least due to our amazing speakers, as evidenced by the superb feedback we have received. We give you a round-up of the day and some of the links that you may need. Please note that none of our sessions were recorded to protect patient privacy.
“Absolutely super day. The best patient info day I think I’ve been to so far!”
“It was the first time that myself and my husband have attended, and we gained such an insight and felt that we were able to talk more confidently to others in the group during this event. The question and answers session are invaluable with being able to get an answer on the most burning of issues that you may have as a patient. I know that I have come away feeling that I can confidently talk to the team looking after my care.”
Our grateful thanks go to our speakers who gave up their Saturday to join us. Professor Karim Meeran, Dr Scott Akker, Professor Tricia Tan, Professor Will Drake, and Dr Cristina Ronchi hosted our popular, interactive, disease-specific Q&A sessions in the morning. After lunch, Dr Cristina Ronchi, Dr Shailesh Gohil and Professor Rebecca Oakey gave us the low-down on their AMEND-funded research projects. We ended the day with a look at fitness and wellbeing, with Dr Emma Williams giving us a run through the 6 pillars of Lifestyle Medicine and how we can make small but positive changes to our lives and fitness (plus a free resistance band!), and finally a relaxing yoga session from AMEND member, Lizzie Dunn, including a free yoga mat to take away!
“The entire meeting was great, with an excellent organisation, and everybody was very friendly. Thank you very much for this!!”
“I was delighted to attend the patient day, I really enjoyed meeting so many people in person”
Thank you to everyone who completed a feedback form or used the online survey after the event. As you can see from the images above, all our sessions were extremely well received. We are pleased to see how those who attended now feel more confident about communicating with health professionals, families and friends about their disease.
Lifestyle Medicine Session
Everyone enjoyed Dr Emma Williams’s presentation on ways to improve our fitness. We have made Emma’s slides and related links available on the AMEND website for your information. If you’ve been using your free resistance band or starting to stack activities into your day, send us a picture so that we can share and inspire others to do the same!
Thanks to everyone who came and for those who participated and volunteered their time and expertise to make this year’s Information Day one of the best yet!
(We are grateful to ITM AG, HRA Pharma and Ipsen for their unconditional grants towards the costs of this event).