27 Apr 2017

2018 AMEND Patient Information Day

• Saturday 12th May, 2018 10:00am to 5:00pm | Central London

  For all those affected by Multiple Endocrine Neoplasia, SDH disorders and Adrenocortical Cancer.

  FREE day of informative talks and plenty of networking and social time to get to know other patients.

  BOOKINGS HAVE NOW CLOSED FOR THIS EVENT

  If you would like to be added to the Waiting List, please contact Helen at the office.

• 2018 PATIENT INFORMATION DAY DRAFT PROGRAMME

  (Subject to change without notice)

  09:30-10:00 REGISTRATION AND REFRESHMENTS
  10:00-10:30  AMEND – PAST, PRESENT AND FUTURE (15 Years of AMEND) [Jo Grey, AMEND CEO]
  10:30-12:00  LEARNING TO BE A PATIENT – adjusting to the new reality
  10:30-11:00  Dealing with Diagnosis (Kym Winter) 11:00-11:45  The Importance of Prehabilitation – How to PREPARE for surgery (Venetia Wynter-Blyth, Imperial) 11:45-12:00  Q&A
  12:00-12:15 AMEND ANNUAL GENERAL MEETING – registered members of AMEND only 12:15-13:45 LUNCHTIME (Rooms 1c and 2c)
  13:45-15:00  BECOMING AN EXPERT PATIENT					13:45-15:00  PARTNERS AND CARERS ONLY
  13:45-14:10  Communicating with your GP (Dr Caroline Diacon, GP) 14:10-14:35  Working with your MDT (Dr Vasilieos Chortis, Birmingham) 14:35-15:00  Getting involved in research (Dr Louise Izatt – Guy’s & St Thomas’s and Dr Rakhee Chauhan – Francis Crick Research Insitutute)					A chance for partners and carers of those with MEN, SDH and ACC to meet and discuss common concerns (Chaired by Kym Winter)
  15:00-15:30 REFRESHMENT BREAK
  15:30-16:30  BECOMING AN EXPERT PATIENT – breakout sessions by condition / age
  MEN1 15:30-15:50  Patient Experience Presentation (Steve) 15:50-16:30  MEN1 Q&A Session (Dr Helen Simpson, UCLH)		MEN2a 15:30-15:50  Patient Experience Presentation (tbc) 15:50-16:30  MEN2a Q&A Session (Prof Karim Meeran, Imperial)		MEN2b 15:30-16:30  Discussion session led by AMEND Counsellor, Kym Winter			SDHx 15:30-15:50  Results of recent research into SDH (Dr Scott Akker, Bart’s & The London) 15:50-16:30  SDHx Q&A Session (Dr Scott Akker)		Adrenocortical Cancer 15:30-15:50  Patient Experience Presentation (Geoff) 15:50-16:30  ACC Q&A Session (Dr Vasilieos Chortis, Birmingham)
  16:30-17:00  AND RELAX!
  16:30-17:00  Whole conference Relaxation Session [Kym Winter]
  17:00 Feedback and Finish

   

  *The ‘Escape Room’  – should you need a time-out – use the colouring books, bubble-wrap, tissues, etc (adults only). Please note this room will NOT be available during break-times.

  *The Crèche is available throughout the day to look after children under the age of 12.  Children are your responsibility during lunchtime.  Pre-booking is essential.

• If you’re interested in speaking about your experience as a patient to a friendly room of other patients, please do contact Jo in the office.

  If you are a medical specialist or researcher who would be interested in coming along and speaking on a relevant topic, please also contact Jo in the office.

  If you are a patient and are interested in coming but are worried about the cost of travel, please contact Jo in the office to discuss our Hardship Fund.

  Some of the feedback received:

  “Brilliant day and so well organised. Thrilled to have been able to attend. Topics so relevant and make you feel in control of your condition. Thank you.”

  “Thank you so much to everyone involved!  I don’t feel quite so rare now!!!”

  “Thanks very much.  The transition session was timely and excellent.”

  “What a great day you have organised!” [speaker]

  “Thanks for an amazing day! I feel so much more positive and able to help my daughter with her MEN2. I can’t wait to bring her next year! x”

  “Thank you AMEND. We had such a lovely time! It was our first visit to a Patient information Day and we’ll try to come to the next ones too”

  “Thank you very much for the day!  It was stimulating and motivating.  It made me feel part of a ‘community’ of other people who are in similar situations.”

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