A big thank you

[artydutch]

A big thank you to all MPN clinicians and MPN VOICE staff who organised an excellent patient day in London yesterday. Thank you for giving up your Saturday and advocating on our behalf. Very much appreciated, an excellent day!

[RoundTheWorld]

There was mention in one of the talks about the difference ‘small acts of kindness’ make - yesterday felt like a generous, big act of kindness in terms of time, effort and medics being open to questions which aren’t always easy to answer. A huge thank you from me too to all involved.

As well as value in terms of the care, research and advocacy I appreciate the empathy, moments of humour and honesty about what isn’t known (yet!) and what’s being done to try to resolve that. An MPN is an initially confusing diagnosis and can feel like the epitome of paddling furiously below the surface at times. It really helps to be treated as people with a natural interest in what’s happening to us, why and what we can or can’t do about it.

Lots of familiar questions from here were raised so well worth a look for anyone not there when the link gets posted.

[gset]

Definitely agree that the day was excellent; it’s so encouraging for all of us to see and hear from the enthusiastic committed professionals who are working unremittingly on our behalf to find treatments and ways to improve our quality of life. It gives so much hope to see how fast the research and drugs have progressed. There is so much being done behind what we see as patients in clinics. We are all very grateful for all of those working on our behalf in these areas and to all those who presented and answered our questions. Thank you.

[MPort]

I hope there will be link to it's recording for those who couldn't make it. I would appreciate hearing it.

[Sprat19]

agree great day

[SUFCbaldy]

Agree with all that's been said. It's the first time I've been to one of these events, and it won't be my last. My thanks to all the organisers, volunteers and experts who gave up their time to make it a great event

[Mazcd Partner MPNVoice]

Thank you everyone for your lovely comments, we were so thrilled to see everyone on the day, some familiar faces and many news ones, and so many joining us online, thank you all for supporting us. It's so lovely to see everyone chatting with each other, sharing stories and offering support, such a great buzz in the room.

We will be putting all the presentations onto our YouTube channel in the next few weeks.

[T1960 in reply to Mazcd]

Hi all. Do we have a link yet for those that couldn't make it?. Well done I sooo appreciate everything you do for us all with an MPN. This group is amazing 😍

[Mazcd Partner MPNVoice in reply to T1960]

We will be putting the videos on our YouTube channel in the next couple of weeks and will then publish the link so you can watch the presentations. Maz