News & Events

Summer Concert 4th July 2013, Young musicians play in aid of MPD Voice

Thursday 4th July 2013, 6.45 pm – 10.15 pm, the first MPD Voice Summer Concert will take place at the Savile Club, London W1.

A host of fantastically gifted young musicians will play in support of MPD Voice, giving their time and talent for free!  The evening will start with drinks, canapés and a short address by Professor Claire Harrison, Chair of MPD Voice. Guests will then ascend the grand staircase for the concert which will take place in the magnificent ‘rococo’ Ballroom.  There will also be a short talk given by Will Self, the author, journalist and television personality, and an auction and raffle will take place.  To purchase tickets, at £85 per person, please contact Rachel at fundraising@mpdvoice.org.uk.  More information is available here…

Living with MPDs Day - 16th November 2013

Saturday 16^th November 2013, 8.45 am – 5 pm.  Join us at the 2^nd Living with MPDs Day and hear leading experts in the field of MPDs talk about trials and new drugs.  Programme and registration details are available here…

MPDlife the newsletter for people with MPDs - March edition

The March 2013 edition of the MPDlife newsletter is now available to download, packed with articles including the latest news on the NICE draft guidance of their preliminary decision not to recommend Ruxolitinib for treating disease related splenomegaly or symptoms in adults with myelofibrosis.  The patient story in this edition is a very honest and moving blog from Jennie Barnes who was told last year that her ET had transformed into leukaemia.

Cambridge and Newcastle Patients' Forums

Why not join us at one of our patient forums, we currently have confirmed forums in Cambridge and Newcastle, we are hoping to hold forums in different locations around the country this year, as well London, we will put the details on the website as soon as we have them.  Forums are a great way to meet other people with MPDs, so why not come along.

You can still book to attend the forums in Cambridge and Newcastle, there are plenty of spaces, email info@mpdvoice.org.uk to let us know you are coming along.

Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance

Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia.

MPD Voice has written to NICE regarding this decision, urging them most strongly to reconsider their decision as we feel this is a very important issue for all of us that have a MPD, especially as the latest results of the trials currently being undertaken are very positive.

The NICE Appraisal Committee has considered the evidence submitted by the manufacturer and the views of non-manufacturer consultees and commentators, and clinical specialists and patient experts. But now the document is for public consultation and it would very much help to hear from patients and their families with myelofibrosis with their views. It will really help to get the decision revised…

You can be part of this consultation by completing the short Appraisal Consultation Document on the NICE website – http://guidance.nice.org.uk/TA/Wave0/615/Consultation/DraftGuidance

Please note the closing date is VERY soon.

Transplant Patient and Family Day

EBMT – European Group for Blood and Marrow Transplantation will be holding a patient and family day on Saturday 6th April 2013 from 9.30 am – 6 pm in The Mermaid Theatre, Puddle Dock, Blackfriars, London, EC4V 3DB, registration fee is £10 per person.

What the day is about

On the day you will meet other patients, talk to medical experts, hear about the latest developments in bone marrow transplant.  You will be able to find out more from the experts about how donors are chosen and the practical and psychological challenges and much more.  The programme for the day will consist of talks from leading experts in the field of bone marrow transplants and workshops and informal discussions, so if you or someone you know is either in the process of undergoing a bone marrow transplant or may be in the future, this is your chance to find out more about the whole process.

The full programme for the day is attached here …

Registration

To register  for this event please click here, you will be directed to the online booking page, tickets cost £10 per person, please note that MPD Voice is unable to make bookings on your behalf. 

Poster – if you are able to advertise this event please download and print a poster.

MPN(D) Related Fatigue Survey

Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with myelofibrosis (MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and polycythaemia vera (PV).  Many things can contribute to this, including the disease, medications that an individual is taking or sometimes the change in blood counts.  Fatigue can have a major impact on our daily lives, reducing some people to having to stay in bed for days on end!  So what can we do about it? 

The MPN Forum magazine published a piece on the Fatigue Project in the November edition, the reason for this research is to help us select an optimized therapeutic path to lead us out of a fatigue dominated life.  With the help of Dr Ruben Mesa of the Mayo Clinic a survey has been put together to identify the effect of fatigue on day to day living, once the results of the survey have been collated they will be assessed by the Mayo Clinic to structure means to test the relative effectiveness of one or more strategies to relieve fatigue.    

If you would like to complete the survey please follow this link, the survey is anonymous and only takes a couple of minutes.

Spring Swing Ball - CANCELLED

We are sorry to announce that the Spring Swing Ball has had to be cancelled.  We would like to thank Jennie Barnes for all the effort and hard work she put into organizing and advertising the Spring Swing Ball which was to be held in aid of MPD Voice and CLIC Sargent.  If you have any queries please contact Jennie Barnes jlbarnesevents@yahoo.com

Charity Christmas Cards in aid of MPD Voice

Support MPD Voice this Christmas by sending our charity Christmas cards, there are 3 designs available, The Tree, Madonna and On the Twelfth Day.  Each pack contains 10 cards and envelopes, the greeting inside each card reads Happy Christmas.  There is also a brief mission statement about MPD Voice with our logo.  Cost per pack = £4.00 (€4.99).  More details of the cards and how to order them are available here…

London Patients' Forum - Wednesday 21st November

Join us for the patients’ forum in London on Wednesday 21st November, 6 – 9 pm, St Thomas’ Hospital.  Patient forums are a great way to meet other people with MPDs, you can get to know more about your MPD and have the chance to speak to health professionals in a relaxed an informal atmosphere.  The forum is free to attend and you can bring family and friends with you.  More information about the forum, including travel directions to St Thomas’ Hospital, is available here…