UK MDS Forum Education Day 19/11/12 for Clinicians – Please inform your doctor!

Monday 19^th November 2012 

Mary Ward House, 5-7 Tavistock Place, London WC1H 9SN

 

 

 

The UK MDS Forum is hosting an education day in London on 19/11/12.

The UK MDS Forum are a group of clinicians and scientists from around the UK who are interested in the clinical and scientific aspects of MDS. It was established three years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials.

This is an event for clinical staff only. Please inform your doctor or nurse!

We would like to encourage patients and members of MDS UK to inform their GP, local haematologist, or nurse about the event by taking them a copy of the programme. The programme can be downloaded here. Travel information for the venue can be downloaded here.

We appreciate your help in raising awareness of the UK MDS Forum and their work!

 

This article talks about various issues around rare conditions and the orphan drugs that are needed to treat those conditions.

It deals with the difficulty in diagnosing rare conditions, the costs of drug development, the role of pharma companies, the investment needed, the cost-effectiveness process applied and what European governments and other stake-holders need to do to sustain future availability of such drugs.

Financial Times article – Orphan Diseases

July 24th, 2012

 

Great article published in the specialist clinical journal Oncology Practice regarding the importance of Quality of Life (QOL) as perceived by patients – as opposed to physicians.

It covers the results of an internet based survey amongst myeloma patients about QOL and various levels of importance of side-effects and symptoms.

It also stresses the work done by various haematology patient support groups to highlight the difference in priorities in QOL.

This article is based on the outcome of  this years EHA Congress (Amsterdam June 2012 – European Haematology Association), and the 3rd meeting of haematology patient support groups with the EHA board.  MDS UK is represented there thanks to the international work done by the MDS Foundation.

The article can be found here:

Cancer Patients Differ With Doctors on QoL Issues – EHA Patient Advocacy Session see http://ow.ly/1Op7d8

The main interviewees are Eric Low from Myeloma UK and Jan Geissler from CML Advocates Network – two of the main members behind the Patient advocacy work undertaken at the EHA congresses, together with Lymphoma, Leukaemia, Thalassaemia and MDS patient groups.

We thank both Eric and Jan for this great interview.

For next years EHA congress in Stockholm, patient groups have been given 3 sessions to promote the benefit of cooperation between patient advocates and clinicians, researchers and pharma. This will be the 3rd year patient groups are given such an opportunity at the EHA congress.  Two years running we had been given 1 single session and presented to a packed and very keen audience of clinicians, researchers and pharma representatives each time.

We will post updates on the programme at next year’s specialist EHA congress and feedback on news – as ever.

 

Another specialist congress promoting the benefits of patient support groups is the EBMT – European Blood and Marrow Transplantation.

They have a Patient and Family Day attached to each congress.

EBMT 2013 will take place in London.
MDS patients and families are strongly encouraged to attend.

Here is the link to the website:
http://www.congrex.ch/ebmt2013/patient-family-day.html 

Further details of the programme will be uploaded there nearer the time.

 

 

If you are using a Hickman line – we have received the following tip and new device from a patient, Sarah Cheeseman, who invented a special holder that makes the central line a little more comfortable.

See below an image of the bag for use with Hickman lines:

 

Check Sarah’s website www.centrallineholder.com for more information and images.

She devised the product following her own experience.   She is now looking for patients to test it and review the product. Click here for contact details.

We thought we’d share our 10 minutes of excitement at King’s College London and the hospital – when the Olympic torch procession made its way through sunny Camberwell – and along Coldharbour Lane, passing the Rayne Institute – where much of the King’s haematology research takes place.

The Rayne also used to be our head-office – before we moved to the hospital itself.

Today the street was filled with King’s staff and happy Camberwellians.

The torch was carried by a King’s member of staff.

Last Wednesday in Harrow it was carried by Dr Ed Glucksman – who is the Clinical Director for Trauma and Emergency Medicine at King’s – and has worked there for 25 years.  An truly amazing and nice person.

We took some photos and included some familiar staff from the haematology department:

Here is a link to the King’s website with more information:

http://www.kch.nhs.uk/news/public/news/view/10695

Enjoy!

 

Participants needed for a survey regarding issues of access to medicines.

This survey is being conducted by a researcher at LSE – London School of Economics – as part of a study looking at problems patients have in accessing their medicines.

Please will you help by completing the survey if you are a patient?

The link to the survey is:

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dEE0dFVxQTJzWUZqZmFnTjBfWENNSkE6MQ
(you may need to cut and paste this link)

Here is also the official introduction to the survey:

This survey is about patient access to branded medicines in the European Union. Patients in the European Union may face difficulty when trying to access both branded and generic medicines. We want to understand the types of barriers patients have faced in the recent past and how these barriers have impacted (or are likely to impact) access to medicines and quality of care. Understanding these barriers will help further research and policy to improve access to medicines. Demographic information is only used to describe the types of individuals completing this survey. Your responses are confidential. By taking part in the survey, you voluntarily consent to be a participant in this study and to answer the following questionnaire to the best of your ability. If you would like to see any other information about the Access Survey, please browse the European Patient Research Network website (http://eprn.wordpress.com).

MDS UK is featured in the Times Newspaper !

Click here to read the news article on rare diseases featuring MDS UK – and the issues faced by small organisations representing rare diseases and rare cancers – including problems about access to treatment, clinical trials, funding generally and low awareness amongst the general public, patients and GP’s.

This article was published in the Times Tuesday July 10th, 2012.

© The Times <07 2012>

Also featured in the article are – Myeloma UK, Cancer Research UK, Rarer Cancers Foundation, GIST, Cancer52 – and many more are listed.

Cancer52 helped to set up this interview – this organisation got its name because 52 per cent (recent statistics show an increase to 53%) of UK cancer deaths are from the less common cancers.
Despite this, the less common cancers remain severely under represented and under-funded across all areas, including policy, services and research.
Cancer52 is an alliance of more than 50 organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases.  MDS UK is a member of Cancer52.

http://www.cancer52.org.uk/

www.myeloma.org.uk/

www.cancerresearchuk.org/

 

 

Sapacitabine continues to show promise in myelodysplastic syndromes patients who have failed treatment with Vidaza or Dacogen, according to results from an ongoing multi-center Phase 2 trial.

Click here to read the full article on The MDS Beacon.

Click here to watch a European Journal of Cancer (EJC) video discussing:

How to address the key challenges in medical oncology

As the video description states: Why are there persistent equalities in cancer outcomes across Europe? What can be done to address the impending shortage of medical oncologists? What needs to happen before personalised medicine becomes routine in clinical practice?

Martine Piccart, incoming President of ESMO, discusses these and other issues facing the profession in this month’s EJC News Focus. She outlines ways in which the organisation will make an impact in the next two years and beyond.

Rare Diseases UK have been contacted by Julie Cook, a freelance journalist for women’s magazines such as Bella and Women’s Own, who has an interest in rare diseases.

She writes for the health pages of these magazines and is interested in doing an article on a family affected by a rare disease that they would like to raise awareness of. The article could include the family talking about how a rare condition affects their lives and what help they get and how they can perhaps help others by raising awareness of the condition.

If you are interested in taking part, please contact Julie at jules_77123@hotmail.com with a brief overview of your experience and a contact telephone number. If she thinks that you may be useful for the article, she will be in touch to arrange a telephone interview at your convenience.