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UICC Newsletter – June 2020

            UICC Newsletter June 2020 COVID-19 unmasks what cancer patients have long known: The world needs a better and more equitable health system © BCI Ghana In an op-ed published by CNN, HRH Princess Dina Mired writes about the inequities in accessing cancer care and the disproportionate burden carried by the poor and disadvantaged.   Read...


5.1 million people across Europe are living with a rare cancer

The Voice of Rare Disease Patients in Europe New European recommendations on rare cancers There are an estimated 5.1 million people living with a rare cancer across Europe and 200 types of rare cancers. The rare disease community and the rare cancer community are sometimes regarded as two different worlds. But this is far from the reality, as patients and...



For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, April 2020   CML and COVID-19: New website section on  We are happy to announce the launch of a new website section to better inform the CML patient advocacy community on what is happening around Chronic Myeloid Leukemia and COVID-19 globally. Advance your knowledge on the CML and COVID-19 global situation...

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CAR-T brosura – HR LC CAR-T Therapy in Lymphoma Today Final – EN Izvor: Lymphoma Coalition Autori: Sara Valente, MPharm, Lymphoma Hub Sylvia Agathou, PhD, Lymphoma Hub Lorna Warwick, Lymphoma Coalition Karen Van Rassel, Lymphoma Coalition


Myeloma Patients Europe (MPE) Telegram channel on COVID-19

   MPE creates a Telegram channel on COVID-19   Myeloma Patients Europe (MPE) has created a Telegram channel in order to share information and resources during the COVID-19 (coronavirus) outbreak. Our aim is sharing useful information materials and resources on COVID-19 (coronavirus) and its relation to myeloma and AL amyloidosis. To join this channel, install the Telegram Messenger app and...


CLL Advocates Network Steering Committee – “COVID-19 and CLL Patients Statement”

Dear friends of the CLL Advocates Network,   it is indeed very encouraging and inspiring to see how many of you have responded to our call and volunteered to translate our "COVID-19 and CLL Patients Statement" into your respective languages.   The Statement is now available in 10 languages: English German Spanish Czech (thank you, Jana Pelouchová, Diagnóza leukemie, Czech...

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Lymphoma Coalition 2020 GPS Final Numbers & CAR-T Toolkit

Dear Members, A quick update as the final numbers for the 2020 GPS have been tabulated, which many have been anxiously awaiting.   As well, to help members continue to support patients with lymphoma and their carers, the CAR-T toolkit is now available, accessible via the link at the bottom of this email. If you need help with local customisation,...


Myeloma, AL amyloidosis and COVID-19

   Myeloma, AL amyloidosis and COVID-19   A new Myeloma Patients Europe (MPE) website section on COVID-19 (coronavirus) has been created for the compilation of documents being generated at national and global level on the management of myeloma and AL amyloidosis patients during the COVID-19 outbreak. Our main goal is to gather information and resources and make sure you have...


Koronavirus (COVID-19) i CLL pacijenti – Preporuke CLL Advocates Network

CLL Advocates Network pomno nadgleda strategije koje se provode u različitim zemljama u borbi protiv virusa COVID-19. Velik dio informacija o COVID-19 virusu ne odnosi se na osobe s kroničnom limfocitnom leukemijom (CLL). Ovim preporukama želimo te informacije nadopuniti i pružiti dodatne savjete za CLL pacijente. Procitajte članak u cijelosti u .pdf formatu. 2020 03 25 COVID-19 & CLL patients...


CML Advocates Network, April 2020

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, April 2020   Recently published: New ELN recommendations for treating CML   We are happy to announce that the European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia have been published on March 3rd, 2020 in the journal #Leukemia.   Updates on the therapeutic landscape, treatment-free remission management, generic medicines and monitoring challenges,...


HULL prenosi informaciju CLL Advocates Networka koja se odnosi na COVID-19 i oboljele od kronične limfocitne leukemije (KLL)

Dear friends of the CLL Advocates Network,   CLL Advocates Network is closely monitoring the strategies being implemented in various countries to manage the COVID-19 virus. Much of the information about COVID-19 does not address the concerns of people with chronic lymphocytic leukaemia (CLL). To fill this gap, the CLL Advocates Network has prepared a Statement on the Coronavirus disease...


MPE publishes advice sheet on coronavirus (Covid-19)

  MPE publishes advice sheet on coronavirus (Covid-19)   Myeloma Patients Europe (MPE) has put together an advice sheet for our members and myeloma and AL amyloidosis patients on coronavirus (Covid-19). This advice has been reviewed by our scientific advisors and will be continually updated to reflect the latest information.  Download it here. Whilst many people will only get mild...


CML Advocates Network March 2020

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, March 2020     CML Horizons 2020 conference moves to November 2020  In light of the circumstances surrounding the global COVID-19 outbreak, the CML Advocates Network Steering Committee met via video-conference yesterday to decide on the future of our annual CML Horizons conference which was due to take place in San José,...