Rare Disease Day – 28th February

Rare Disease Day – 28th February

Check what events took place all over the world:

http://www.rarediseaseday.org/article/about-rare-disease-day

Check also the video done for the occasion:

 

Lord Avebury – who often blogs about his MPD myelofibrosis also asked a question in the House of Lords on the occasion of Rare Disease Day:

Lord Avebury: My Lords, I declare an interest as a sufferer from myelofibrosis, which is one of the 6,000-plus rare diseases that have been identified which affect 3.5 million people in the UK. May I ask my noble friend to comment on how the £100 million genome sequencing project is expected to contribute to the understanding of rare diseases? Secondly, will the rare diseases stakeholder forum that he announced yesterday consider the value to both patients and the NHS of care co-ordinators, which was emphasised by the NGO Rare Disease UK?

You can check the question now – and the answer as soon as it is uploaded to the Hansard:

http://www.publications.parliament.uk/pa/ld201213/ldhansrd/text/130228-0001.htm#13022861001193

More articles from Lord Avebury on this website:

http://www.libdemvoice.org/author/eric-avebury

and

http://ericavebury.blogspot.co.uk/  where he often shares his blood results.

 

 

The next MDS Foundation Newsletter is also available – should you have missed out on it recently.

Please use link below:

fall2012newsletter-102712

Our third Newsletter is now available online – with a update on clinical and research news from the ASH Congress (American Society of Haematology), from EHA (European Haematology Association), an article about Fatigue, fundrasing news and much more.

Please click here to access the MDS_Newsletter_Jan2013

A paper copy is being sent to all our registered members in the week of 18th February – as well as all haematology departments with whom we are in touch.
Individual members – If you require further copies please email or call us.
Hospitals – If you wish to receive a stock of newsletter and leaflets to display in your waiting room – please specify quantity of newsletters required – and full postal address (incl department/building).

The next newsletter will be published at the end of June.

Thank you

The government has set up a Commons Select Committee to inquire into clinical trials and disclosure of data.

To date, numerous trials are running, but not all results are always published or made available – especially the negative results.

The general concensus amongst physicians, patient groups and researchers is that good or bad – all results should be made available.

MDS UK fully supports this request.

Here is what the parliamentary website says:

Clinical trials in the UK are regulated by the Clinical Trials Directive which was transposed into UK law by the Medicines for Human Use (Clinical Trials) Regulations 2004. In December 2011, the Health Research Authority was created to protect and promote the interests of patients and the public in health research. In July 2012, the European Commission produced proposals to revise the Clinical Trials Directive.

Transparency and disclosure of clinical trial data have been topical recently, in part due to the recently published book Bad Pharma, by Dr Ben Goldacre. It highlighted that pharmaceutical companies are entitled to conduct numerous clinical trials on a new drug but publish selectively, thus skewing the evidence base available for doctors and patients seeking to make informed decisions.

Read more on their website:
http://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/news/121213-clinical-trials-inquiry-announced/

PETITION
Here is also a petition with more information about the All Trials Campaign – which you can sign and forward to others.
This is what they say:
It’s time all clinical trial results are reported. Patients, researchers, pharmacists, doctors and regulators everywhere will benefit from publication of clinical trial results. Wherever you are in the world please sign the petition:

Thousands of clinical trials have not reported their results; some have not even been registered.
Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated.
All trials past and present should be registered, and the full methods and the results reported.
We call on governments, regulators and research bodies to implement measures to achieve this.

For more info and to sign this petition: http://www.alltrials.net/

We are glad to hear that the pharma company GSK (GlaxoSmithKline) has committed to publishing all their clinical trial data.
We hope many more pharma companies will follow this example as soon as possible.
http://www.guardian.co.uk/business/2013/feb/05/glaxo-smith-kline-publish-clinical-trial-data

We have also posted this information on our Facebook page – please share widely.

This is a potential important progress regarding the availability of information about existing and future drugs.

 

Early research results about a better understanding of the way azacitidine works.

Specifically about why azacitidine does not not in some people.

This is encouraging, but very early research – much more work needs to be done to pursue these early results.

Link to MDS Beacon site – which provides a patient friendly interpretation of the research paper:

MDS Beacon – azacitidine research paper

Download our second newsletter containing updates, news from the American Society of Hematology 2011, introduction of our new patrons, fundraising stories, patient  inputs and more.

We are now starting to collect newsletter articles for the next volume to appear in January 2013 and encourage all patients who may be interested to take part. Please contact us at the office if you are interested in contributing to Volume 3.

Click on the image to open the pdf file

MDS_Newsletter_April2012_volume2

 

 

 

As part of their coverage for Rare Disease Day, BBC Online has included the story of an MDS patient – Patricia Ellis – who has attended our London Forum in the past.  BBC Online also included a link to our website in their health section.

This is the link to the BBC Online site: here

 

Findings presented at the 2012 annual meeting of the American Society of Hematology (ASCO) in Chicago earlier this month suggest Myelodysplastic syndromes patients with autoimmune disorders may be more responsive to treatment with Vidaza or Dacogen than patients without autoimmune disorders.

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

Access Advocacy, a research body working on behalf of the Department of Health, invites members of the MDS UK Patient Support Group to take part in a survey on what matters to patients and their carers about being in hospital. This will help the Department of Health to develop a new system of ‘Patient-led Inspections of Hospitals’ which will replace Patient Environment Action Team (PEAT) inspections in coming months.

It is important to hear the views of a wide range of patients and their carers. All responses will be kept completely confidential.

Please read the following and click the link to complete the survey if you are interested in taking part:

What is important about being treated in hospital?

The Department of Health is establishing a new system of patient-led inspections of the hospital environment, as announced by the Prime Minister in January.  In order to develop the questions to ask the patients and their carers, it is important to find out what’s important and really matters to them about the hospital environment.

Here is an opportunity for you to contribute to this.  You are invited to take part in this survey if:

• · You have experience of being treated in hospital in the last couple of years, and/or
• · You are able to represent a patient or group of patients

The survey can be found here:

http://www.zoomerang.com/Survey/WEB22FNNCWBVHL

Please do take a few minutes to complete the questionnaire, ideally by Friday June 1st; your feedback really matters.  All responses will be completely confidential.

Listen to Radio 4’s  Money Box programme, broadcast on 13/06/12, which discussed issues around charitable giving.

As the programme information states:

“Donating money to charity has been in the headlines after the Chancellor George Osborne recently dropped plans to limit tax relief on charitable giving. Mr Osborne had announced the proposals in his March Budget, but they provoked a storm of protest from charities. Last year Britons gave £11 billion to charity, according to research carried out by the Office of National Statistics. But while an extra 1 million people donated money to charity, the average (median) amount given per month has fallen compared to 2010. And in real terms the total value of donations remained the same as the previous year. More people have been donating cash via online sites or by text as well as more traditional ways. So what are the different ways to give and what tax reliefs are available? Are you clear about Gift Aid declarations? Do you know if your employer has a payroll giving scheme and how it works? Perhaps you want to leave a charitable gift in your will and want advice on how to do this? Or you might want to give money via an online site or by text and want to know which sites charge less for the service?”

Click here to listen to the programme in full (via BBC iPlayer).