25 May 2023
AMEND Annual Patient Information Day Success
AMEND CEO, Jo Grey, began the proceedings promptly at 10am, giving an overview of the 20-year history of AMEND, of all the diseases we support, and of the plan for day. Next it was time for the 2-hour disease-specific Q&A sessions, for which we were grateful to our volunteer medical expert hosts, Professor Ashley Grossman (MEN1), Professor Karim Meeran (MEN2, MEN3, MTC), Dr Ruth Casey (PPGL) and Dr Cristina Ronchi (ACC).
‘The highlight for me and my 13-year-old was definitely having the Q&A with Professor Karim. I think he had lots of slides set up, but actually the way the session worked with more of a Q&A and sharing experiences direction was so helpful.’
- DOWNLOAD AMEND INTRO SLIDES (PDF 5MB)
After a fabulous and varied lunch, with plenty of time for making new friends and catching up with existing ones, Professor Karim Meeran once again took the floor to discuss why blood test results don’t always reflect the way we feel – even rare endocrine disease patients can be floored by viruses! Psychotherapist from rareminds, Zubyda Azzam, then ran through some coping mechanisms for dealing with the uncertainties of living life with our diseases. Then Assistant Physiotherapy Practitioner, Carrie Beasley, ran through some simple exercises to get us moving again, particularly after surgery.
- DOWNLOAD RAREMINDS SLIDES (PDF 654KB)
- DOWNLOAD FITNESS HANDOUT (PDF 288KB)
‘It was a good informative day and meeting and talking with others affected and unique like myself is really helpful and feel-good feelings Thank you.’
After another refreshment break, volunteer and MEN1 member, Lizzie Dunn, ran an all-ability yoga session in a room with a wonderful view over the canal – very relaxing! At the end of the day, some attendees stayed on and met with staff and volunteers at a nearby pub to toast 20 years of AMEND. Cheers!
‘A fantastic day! So informative & lots gained. This is a great community with wonderful people. Thank you, Jo Grey & Team’
- If you booked places at the Information Day and didn’t turn up or cancel more than 2 weeks prior to the event, we ask that you donate the cost of your place to AMEND to offset the waste of charitable funds. Donations of £50 per ticket can be made via CAF Donate on the AMEND Website
- The 2024 Information Day will be held on Saturday 18th May, at a venue yet to be decided. Due to the continued ‘no-shows’ on the day, we will be introducing a modest charge for tickets. Bookings will open later this year.