Cambridge Rare Disease Network (CRDN) Conference 2017

Dan JeffriesAcromegaly, Advocacy, cambridge, CRDN, pituitary, Rare Disease, wyburn-mason syndrome3 Comments

dj cambridge 777x583 - Cambridge Rare Disease Network (CRDN) Conference 2017

It’s fair to say, I’ve been a busy boy.

Last month it was Canada, next week it’s Belgrade and yesterday it was Cambridge. OK, not quite as far away as the rest, but what an amazing setting for the Cambridge Rare Disease Network conference (CRDN).

I contacted the organisers a few months ago and asked if there was any way I could get involved. I explained that I wasn’t part of a patient support group nor a patient service, but that I would be representing myself and my two rare conditions: Acromegaly and Wyburn-Mason syndrome.

Whilst the programme had already been confirmed, I was more than welcome to attend and asked if I would produce two posters about my conditions, with a focus on:

  • Causes of the condition
  • Symptoms and Treatment
  • Impact of the Condition
  • Hopes and Aspirations for the future

And so, with a bit of advice and guidance from my friend David at Company-X (who helped design the book), I produced two posters. I was also made aware that there was a competition: to produce a Patient Journey poster and, in return, have five minutes on stage to talk to the conference about the patient journey and highlight three areas that should be focused on.

Over 40 posters were entered and only five were picked. And – lucky me – I was one of them.

Your patient journey poster particularly was nominated as the best patient journey story for its excellent quality of educational information and its impact. Your use of photos and images to illustrate the patient journey really cleverly draws you in to read more.

Patient Journey Dan Jeffries - Cambridge Rare Disease Network (CRDN) Conference 2017Wyburn Mason information - Cambridge Rare Disease Network (CRDN) Conference 2017Acromegaly Conditions - Cambridge Rare Disease Network (CRDN) Conference 2017

An Amazing Day

The conference itself was fantastic. There were experts talking about the science and genetics of rare diseases, the sharing of data, a rare disease search engine, drug repositioning and the role of pharmaceuticals, advocacy, awareness raising and more. It was particularly inspiring to meet individuals who now found themselves running a charity or being a spokesperson for a rare condition — simply because nature had decided that they or their loved one should befall a rare condition. It’s incredibly empowering to see this in action.

For myself, I had a great day. I managed to sell over 20 books, meet lots of people interested in my story, forged some great friendships and some exciting possibilities too. I’ve been to a few conferences and this was one of the warmest and best thought-out in a long time. Congratulations to everyone involved at the CRDN. See you next year!

3 Comments on “Cambridge Rare Disease Network (CRDN) Conference 2017”

  1. It was a pleasure to have you participate so wholeheartedly in the summit Dan. Thanks so much for an excellent talk. I expect many positive collaborations to come of this!!

  2. Pingback: 2017: A Year in Review | TWAT DJ

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