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Radio Day: October 25, MDS World Awareness Day. Catch-up on the stories of 4 people affected by MDS

MDS is a rare form of blood cancer

Annually 2,240 patients in the UK are diagnosed with myelodysplastic syndromes (MDS)

On October 25 we marked MDS World Awareness Day to raise public awareness of myelodysplastic syndromes (MDS) and its symptoms. We joined forces with UK local and national radio stations

11 interviews

130 minutes of airtime on local and national radio stations

We reached 1.78m people!

Four people affected by MDS were interviewed on radio stations across the UK to spread the voice, for a greater understanding of MDS and for more research to be conducted to find a cure!

Follow us on Facebook and Twitter and share their stories!

MDS UK and the Cabbage Patch 10 Mile Race

This year, under the patronage of Caitlin Limmer, who also passes for race director of CB10, MDS UK had a team of 20 runners at the Cabbage Patch Run. This is the third year that MDS UK have had a big presence and it’s now our ‘signature’ event. Help us raise enough money to cover the cost of a patient forum meeting! We also hope to add to our vision of supporting research into MDS.

After the Cabbage Patch Run the lovely runners from the BearCat Running Club marked MDS Awareness Day with a wonderful a-cappella song!

MDS UK Patient Support Group: Supporting GPs and Healthcare Professionals

We produced a Factsheet for GPs and Healthcare Professionals to help them spot early signs of MDS and refer patients to a specialist.

GPs are advised to be aware of patients who have persistently low blood counts or an unexplained need for blood transfusions. It is also important to note that some people with MDS don’t present any signs or symptoms at the time of their initial presentation, and that the disease is often only picked up via routine blood tests or procedures, which sets MDS apart from other blood cancers.

MDS UK Patient Support Group: Supporting MDS Patients and their Families

We provide a range of services for people affected by Myelodysplastic Syndromes (MDS)

People access more than 900 pages on MDS UK website every single day. On Radio Day people visited almost 2,000 pages!

MDS Website PageViews

And we also organise local group meetings. Watch Claudia talking about the many benefits of attending a meeting

Join your Local MDS Group

When do they meet and how to contact them

We’d like to sincerely thank those who made the World Awareness Day Radio Day Experience possible:

Reynolds McKenzie Healthcare PR, specifically Sophie and Natacha, as well as 4 Media Relations, Ellie and her team – for working with us on all preparations, content and scheduling.

And Celgene UK as our main financial support for this radio event.

Make Blood Cancer Visible: The Patient Stories

Why are we campaigning to Make Blood Cancer Visible?

September is blood cancer awareness month and we are working together to #MakeBloodCancerVisible.

Blood cancer affects 240,000 adults and children in the UK and claims more lives each year than either breast or prostate cancer. Yet, blood cancer does not get the priority and recognition it deserves. (See full information article in Bloodwise)

During September, we are calling on governments in the UK to make blood cancer a priority, starting with clear long-term commitments in their next cancer plan.

Make Blood Cancer Visible - The Patients Stories

Help us Campaign to Make Blood Cancer - and Myelodysplastic Syndromes - Visible

For MDS in particular, and other rare forms of blood cancer, the campaign helps to make them known among the general public, so that MDS patients and carers, as well as doctors and nurses get to know the disease and its effects better.

The Make Blood Cancer Visible installation, in Edinburgh this weekend, features 10 life-sized transparent figures, which represent the ‘unseen’ or invisible nature of blood cancer, and engages passers-by while encouraging them to show their support for the campaign.

Each of the figures shares the individual experience of those living with blood cancer through audio stories, making them seen and heard.

The following slideshows, showing images, audio files and quotes, and the Audio Stories try to capture the spirit of the installation.

Please share them on Facebook and Twitter, send emails and messages to your friends and family and help us #MakeBloodCancerVisible this September and onwards.

Make Blood Cancer Visible - September 2018

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.

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