Our "Here to Help", which was officially launched on October 25, 2016 during the MDS World Awareness Day, is an on going activity of the MDS alliance to raise awareness of MDS and the MDS Alliance network of MDS support patient support organisations.
We aim to provide member organisations, patients and healthcare teams with the resources and the latest information about MDS, including current treatment options, large international projects and events of Interest to the whole community.
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Helena Hurme’s Memorial
The MDS Alliance is sorry to share the very sad news that Helena Hurme, Suomen Syöpäpotilaat ry (Association of Cancer Patients in Finland), has recently passed. Helena will be a huge loss to the MDS advocacy community. Please see the memorial for Helena shared by the MDSA Steering Committee below:
“Helena was a great enthusiastic patient advocate, who very sadly was not able to pursue her advocacy role lately, due complications of her Myelodysplastic Syndromes (MDS), and extremely severe Sweet’s Syndrome. Sweet’s Syndrome is a very rare issue but can be devastating to quality of life and prognosis.
Helena maintained her advocate role as long as she could, attending a 2019 EHA conference with all patient advocates, despite serious side-effects of treatment affecting her QoL. She was wonderfully determined and hopeful the treatments would help. Thanks to her background as a counsellor, she was and would have continued to be, a very helpful and much needed asset to the advocacy community.
It was a pleasure to know her – and way too short. We will miss Helena very much.”
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