• After a long 18-month delay, the AMEND Annual Patient Information Day finally went ahead in person on Saturday 16th October at the Paddington Novotel in London, with covid-19 vaccine/LFT checking before entry.  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 in order 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.”


    Missing in Action (MIA)

    Unfortunately, this year we had a record number of MIAs.  23 people booked tickets but did not turn up on the day, nor did they let us know that they couldn’t make it. Spaces at our Information Days cost a minimum of £50 each, and so the MIAs this year equated to a waste for the charity of £1,150.  This could have funded:
    •    19 counselling sessions, or
    •    76 free member packs, or even
    •    500 printed information booklets
    If you were MIA, we would be grateful for a donation towards the cost of your unused ticket(s).  We would also kindly ask that, in future, anyone who has any doubt about attending an Information Day should either cancel at least 2 weeks before the event (our final bill payment deadline), or book tickets nearer the event when attendance is certain.  We keep a record of all MIAs and repeat offenders may be blocked from booking events in the future.  Thank you.

    Wonderful Speakers

    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 Gohill 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 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”

    “I really enjoyed this morning; thank you for inviting me”


    Excellent Feedback

    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 are pleased to be able to share Emma’s slides and pertinent links 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!

    Topics Links:


    Information Tables – Best Bits

    Several tables were laid out at the Information Day to help people connect with the information and resources they need.  Here are the links to the best bits of the tables:

    Information & Support Table:

    1. WhatsApp Groups for young adults with MEN syndromes aged 13-30 (moderated by trained and checked volunteer)
    2. AMEND’s free Counselling Service
    3. All our free resources

    Research Opportunities Table:

    1. NHS Medicines Price Gouging Petition (please sign!)
    2. Steroid Clinical Trial – hydrocortisone vs prednisolone in adrenal insufficiency
    3. AMEND Community Advisory Groups
    4. MEN1 Research Registry

    Fundraising & Merchandise Table:

    1. AMEND Shop
    2. Teemill Store (sustainable, organic, cotton clothing store)
  • AMEND Annual Patient Information Day 2022

    The 2022 Annual Patient Information Day will be held in central Manchester on Saturday 7th May, 2022.  You can already book tickets, but we would remind everyone that any cancellations should be made at least 2 weeks prior to the event, to avoid unnecessary expenditure and waste of charity money.  Thank you.