The Canyon between Diagnosis and Therapy in MDS
Impressions of the 15 th International MDS-Symposium in Copenhagen in May 2019 – from the patient perspective
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Has your Patient Group set up a reasonable legal agreement with a Pharmaceutical Company?
WECAN, an informal network of leaders of cancer patient umbrella organisations active in Europe, has developed, together with with PFMD and legal experts from 12 pharmaceutical companies, an important set of guiding principles for reasonable legal agreements between patient advocates and pharmaceutical companies. The guidelines aims to make legal agreements between both parties easier and…
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Global Quality of Life Survey for Patients with Acute Leukemia
The Acute Leukemia Advocates Network (ALAN) is running a global patient survey to assess quality of life at different points in the acute leukemia patient journey. You can access the survey here: http://www.myonlinesurvey.co.uk/ALAN ABOUT ACUTE LEUKEMIA Acute leukemia is an aggressive disease; it progresses extremely rapidly without treatment and has historically been associated with poor outcomes…
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Focus on Croatia: MDS Alliance Members’ News
News from MDS Support Community in Croatia by Dražen Vincek Croatia marked MDS World Awareness Day Croatia celebrated MDS World Awareness Day on the 25th of October. The event organised by HULL (The Croatian Leukemia and Lymphoma Society) started at 15:00 hours at the Croatian Journalist Association Club in Zagreb, where experts from all fields…
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Focus on Croatia: MDS Alliance Members’ News
News from MDS Support Community in Croatia by Dražen Vincek Croatia marked MDS World Awareness Day Croatia celebrated MDS World Awareness Day on the 25th of October. The event organised by HULL (The Croatian Leukemia and Lymphoma Society) started at 15:00 hours at the Croatian Journalist Association Club in Zagreb, where experts from all fields…
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Focus on Croatia: MDS Alliance Members’ News
News from MDS Support Community in Croatia by Dražen Vincek Croatia marked MDS World Awareness Day Croatia celebrated MDS World Awareness Day on the 25th of October. The event organised by HULL (The Croatian Leukemia and Lymphoma Society) started at 15:00 hours at the Croatian Journalist Association Club in Zagreb, where experts from all fields…
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Focus on Kosovo: MDS Alliance Members’ News
A new MDS Support Community is born in Kosovo – by Blerina Ahmetaj-Shala What does it mean to be an MDS Patient in Kosovo? Meet Gani Shala My father in law, Gani Shala, lives in Pristina, Kosovo – a country still even 20 years after war is trying to build itself up. Although feeling fine Gani…
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Focus on Finland: MDS Alliance Members’ News
Association of Cancer Patients and the MDS Network in Finland The Association of Cancer Patients in Finland aims to safeguard the best possible support for cancer patients and their families during treatment and rehabilitation, as well as to reduce the adverse effects in society caused by cancer. The Association was founded in 1971, and one…
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EuroBloodNet aims for better care for patients with rare blood disorders
Patients suffering from rare blood disorders will benefit from networks of excellence across the European member states.
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Latest News from Our Members
Diagnoza leukemie Czech Patient Society Diagnoza leukemie Czech Patient society will soon launch an MDS Patient Video library on its website and organize first meeting for MDS patients in Prague on 2 December 2017. It also defends MDS patients interests as member of Patient Council of the Czech Health Ministry and negotiates with payers and…
