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 other stakeholders.

Thanks to the support of the MDS Alliance, Jana Pelouchova took MDS as priority over the past two months intense work, including supporting legislative changes on access to innovative therapies.

The Public Organization For Patients with Hematological Diseases – Russia

This year we’ve held the MDS Day by issuing our Russian brochure for MDS patients, produced together with a hematologist, Dr of medical sciences Sergey Gritsaev from the Scientific Institute of Hematology of St. Petersburg.

Today we will publish a press release in the main Russian medical media dedicated to MDS Awareness Day on behalf of our patient society.

In addition, this year we’ve helped MDS patients to receive the most advanced therapy for their disease. We’ve had several court hearings across Russian regions. All the hearings were successful for us and our patients.

Linfomas Argentina

This year we’ve held the First Argentinian Patient – Relative – Nurse – Caregiver Encounter in Buenos Aires, with the aim of informing patients about MDS and making this disease be known among the general population. Not enough clinicians in Argentina know how to diagnose patients quickly and refer them to treatment.

Patients and relatives asked many questions about new drugs, treatments and frequency of these meetings. Our nurse coordinator, Mariela Blanco, described the Clinical Trial process and stressed the fact that it is a safe procedure.

Haydee Gonzalez, President of Linfomas Argentina, talked about her own experience as a patient. Gabriel Duarte, a nurse with years of experience in Azacitidine, which he administers to patients in hospitals as well as homes, explained how the drug is prepared and administered.

ABRALE – Brazil

Brazil is advancing rapidly in open data analyses and real world evidence.

ABRALE is taking advantage of technology advancements to improve knowledge about oncology facts in their country.

They have their own registry of patients and collect real world evidence. They also make use of government open data and analyze them and publish in a dynamic and interactive online platform.

ABRALE data analysis, done by data scientists, contribute immensely to the understanding of the oncology scenarium, reflecting the situation of populations that are underrepresented in clinical trial studies.