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It's #MDSWorldAwarenessDay tomorrow. Please click on my video to see how you can help! #MDSUKPatientSupportGroup

Posted by Jenny Milne on Saturday, 24 October 2015

It's #MDSWorldAwarenessDay tomorrow. Please click on my video to see how you can help! #MDSUKPatientSupportGroup

Posted by Jenny Milne on Saturday, 24 October 2015


Zlatko Sisic

I am a qualified medical doctor. A couple of years after I graduated from the Medical School I was diagnosed with Aplastic Anaemia. I had a bone marrow transplant at St George’s Hospital, Tooting Broadway, in 1992.

My recovery from the illness took a long time and whilst I was poorly and unable to continue my career in clinical medicine, I focused my attention on further education. I graduated from the Westminster University with the degree in Acupuncture and Chinese Medicine in 1998.

In year 2000 I joined the pharmaceutical industry where I have gained knowledge and experience by progressing through a variety of positions in sales, medical marketing, R&D and strategic business development. In the meantime I also obtained a business degree, Masters in Business Administration.

My speciality has become rare diseases with unmet medical need and I have lead or been a part of a number of projects focusing on medical education, clinical studies and access and reimbursement. I have also gained a significant experience working in partnership with patient organisations on disease awareness.

In my private life I enjoy outdoor activities and over the years I have become a keen cyclist and skier.


EU drug approval for MDS sub-type del 5q

Great and long awaited positive news:

Lenalidomide/Revlimid – the drug developed by pharma company Celgene has finally received approval for use in Europe – for transfusion dependent MDS patients who have the sub-type del 5q (also called 5q-).

This is wonderful news, as approval has been long awaited by MDS 5q- patients all over Europe.

The drug had been approved by the FDA in the USA – and in use there for several years – but the European Medicines Agency had insisted on further trials and data before approving its use for Europe.
The EMA looks specifically at the safety aspect of new drugs.

Some UK (and European) 5q- MDS patients had been receiving treatment with lenalidomide already – but only on a trial basis.

For the UK specifically, this drug will now go through the NICE assessment system to determine its cost-effectiveness.
We will post further news about this soon – as patients are encouraged to send comments to NICE.
The NICE meeting will take place in June.

For the time being, lenalidomide/Revlimid will be available to MDS patients in the UK via the Cancer Drug Fund.


Here are the full details regarding the EMA decision:

Link to full PDF document and details EMA decision on Revlimid/Lenalidomide

On 25 April 2013, the Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion recommending a variation to the terms of the marketing authorisation for the medicinal product Revlimid. The marketing authorisation holder for this medicinal product is Celgene Europe Limited. 
The CHMP adopted a new indication as follows:
“Myelodysplastic syndromes Revlimid is indicated for the treatment of patients with transfusion-dependent anaemia due to low- or intermediate-1-risk myelodysplastic syndromes associated with an isolated deletion 5q cytogenetic 
abnormality when other therapeutic options are insufficient or inadequate.”

For further information about EMA:  EMA website

MDS World Awareness Day 25th October – Request your pack now!

Help us to mark MDS World Awareness Day on 25th October 2012 by displaying one of these downloadable MDS World Awareness Day posters in your local hospital, church, library, post office, work place or local pub!

A4 size available here (normal sheet of paper size)

A3 size available here (2x normal sheet of paper size)

Request badges from the MDS UK main office by calling or emailing us and we will send you a pack of badges. Take photos of yourselves wearing the badges in your hospital, workplace, or home and send them to us so we can show how MDS World Awareness Day was marked in the UK.

Call: 020 7733 7558 or Email:

to get your MDS World Awareness Day pack!

MDS Film coming up – launch on the 25th October!

An exclusive video clip made by the international coalition of MDS patient groups backing the Life Beyond Limits campaign will be released on MDS World Awareness Day. The video will be uploaded here. (Initially planned for early release – but unfortunately had to be postponed till the actual day….sorry…but not long to wait until the 25th October)

Click here to see more information on the Life Beyond Limits Campaign and other exciting recent events helping to raise awareness of MDS and support MDS patients from around the world.


MDS UK will host an information stall at King’s College Hospital, London on MONDAY 22nd OCTOBER and we would like to invite MDS patients, families and friends in the London area to volunteer any time they can spare to help hand out badges and leaflets to visitors throughout the day.

We would very much appreciate any time you are able to give (even if this is just 30 mins or an hour) and welcome as many volunteers as possible!

If you are able to help, please contact us by writing to or call 02077337558. We would love to hear from you! THANK YOU!

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