Support, Information, Awareness & Campaigns for those affected by MDS

Suzie, diagnosed with MDS when she was 6 years old

We thought it was just a normal childhood virus Suzie was 5 years old when she became unwell. She developed a really high temperature...
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Suzie, diagnosed with MDS when she was 6 years old

Adrian, husband of Emma, who was diagnosed with MDS in August 2018

Emma's diagnosis came as a shock Emma was diagnosed with MDS in August this year, which came as a bit of shock. She has...
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Adrian, husband of Emma, who was diagnosed with MDS in August 2018

Russell Cook: “The diagnosis has given me an enormous focus, it’s made my family much closer”

In 2010 I had the last of three bone marrow transplants to treat my MDS. Quite a few things have happened since then! From...
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Russell Cook: “The diagnosis has given me an enormous focus, it’s made my family much closer”

Ally Boyle: a retired fire officer tells us his experience with MDS

In mid 2007 I began to feel really exhausted and unwell, I had been working long hours in a stressful job as a senior...
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Ally Boyle: a retired fire officer tells us his experience with MDS

Ghani needed Azacitidine, but in Kosovo there was no easy way to get it

What national and international patient advocacy can achieve when working in cooperation By Blerina Ahmetaj-Shala. Imagine hearing the news – you father in law,...
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Ghani needed Azacitidine, but in Kosovo there was no easy way to get it

Bergit Kulhe, MDS patient and advocate, tells us about her experience with iron chelation

Following is an article by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle. Bergit, together with Anita Waldmann, runs an MDS...
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Bergit Kulhe, MDS patient and advocate, tells us about her experience with iron chelation

Joseph Vella: His experience with azacitidine and stem cell transplant at the age of 63

“I hope and trust that my little story would encourage other MDS sufferers to decide to go through with the treatment. It was proved...
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Joseph Vella: His experience with azacitidine and stem cell transplant at the age of 63

Reginald Hall Patient Story: at 95 and happily married

Reginald Hall's story is an uplifting one. Reginald is an MDS patient who has been a member of MDS UK Patient Support group for...
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Reginald Hall Patient Story: at 95 and happily married

Evie McClean

Evie McClean is a young member of the MDS UK Patient Support Group. In July 2014, when she was 8 years old, Evie was...
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Evie McClean

Shirley O’Brien MDS Story

How a clinical trial gave me my life back after MDS and AML Five years ago, my spouse and I had settled into our...
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Shirley O’Brien MDS Story

Upcoming Events

  1. Southampton Region MDS Support Group Meetings 13/02/19

    13/02/2019 @ 10:00 am - 1:00 pm
  2. Oxford MDS UK Local Patient Meeting – 08/03/19

    08/03/2019 @ 10:30 am - 12:30 pm
  3. Anglia MDS UK Local Patient Meeting – 11/03/2019

    11/03/2019 @ 10:30 am - 12:00 pm

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The MDS UK Patient Support Group is affiliated with the UK MDS Forum, the foremost UK specialists organisation focused upon MDS, providing information and advice on the status and progress with MDS research and treatment in the UK, as well as the MDS Foundation, Inc, based in the USA. The MDS UK Patient Support Group is also supported by major pharmaceutical companies and other organisations.

The MDS UK Patient Support Group is a founding member of the MDS Alliance, the international umbrella group for all national MDS support groups. The MDS Alliance is dedicated to sharing and improving MDS information and awareness between patients, globally.MDS UK Patient Support Group is a registered charity. Reg Charity No: 1145214

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