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CML Advocates Network, February 2020

View this email in your browser For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, February 2020   Rare Disease Day 2020 Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Rare Disease Day is a global awareness-raising campaign promoting...

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LIVING WITH CML – Patient stories to help better understand daily life with Chronic Myeloid Leukemia (CML)

Lisa Machado lives in Toronto, Canada. She was diagnosed with chronic myeloid leukemia in 2008, when her son Anthony was just one year old, and her daughter Grace was three. Lisa is the founder of the Canadian CML Network. She is also a journalist, writing about the challenges facing people living with cancer, but also exploring what it means to be...

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Lymphoma Coalition Newsletter – January 2020

U prilogu možete pogledati novi Lymphoma Coalition bilten za Siječanj 2020. Lymphoma Coalition Newsletter – January 2020

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ASH 2019 Congress: CML reports

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, ASH 2019             61st American Society of Hematology Congress Chronic Myeloid Leukemia reports  In December 2019, the American Society of Hematology held its 61st Congress in Orlando, USA. The CML Advocates Network, with the help of our team of patient advocates, has summarized the chronic myeloid leukemia highlights presented in...

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LC – the survey count by member countries for patient respondents

Dear Members, To date, we have received 2277 responses (patient and caregiver surveys combined) to the 2020 Global Patient Survey on Lymphomas & CLL. A number of groups are actively promoting the survey, which is working well.  Keep reading to the end of this email for more information on marketing the survey, including information on what has been translated for your...

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CML Advocates Network, January 2020

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, January 2020       Our CML clinical trials data-base now lists 54 studies worldwide Our clinical trials registry currently lists 54 studies: 32 CML studies actively recruiting patients, including 2 paediatric trials 7 treatment-free remission trials 20 studies that are no longer recruiting We are pleased to share new trials from...

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Lymphoma Coalition – Survey count by member countries for patient respondents

Dear Members, To date, we have received 1191 responses (patient and caregiver surveys combined) to the 2020 Global Patient Survey on Lymphomas & CLL! Great job everyone! Keep reading to the end of this email for more information on marketing the survey, including information on what has been translated for your use. See below for the survey count by member countries for...

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The 2020 LC Global Patient Survey on Lymphomas and CLL is now LIVE

You can find the survey link on our website, here: www.lymphomacoalition.org/GPS2020.  We appreciate your patience as we worked through some final translation edits.  As a reminder, the survey is available in 19 languages: Arabic Finnish Japanese Serbian Bulgarian French Korean Slovakian Chinese German Lithuanian Spanish Dutch Hindi Portuguese Swedish English Italian Punjabi     Please ask your membership, patients and caregivers/family/friends...

IAPO

IAPO 2019 newsletter

Dear Dražen, Welcome to the final issue of the IAPO 2019 newsletter. Thank you to everyone who took part in making 2019 an excellent year for all of us at IAPO. Some of our highlights include; the establishment of the first ever World Patient Safety Day in May and its marking in September, the IAPO governance framework reviewin June, our first ever Regional Asia Pacific Patients Congress in November...

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Patient Solidarity Day

Speaking up for safe patient-centred UHC Join us tomorrow as we call for our leaders to keep their promise to address global patient safety in a concerted manner and accelerate progress for safe patient-centred universal health coverage (UHC). This is based on our belief that every person, no matter who they are or where they live, should be able to get the quality health...

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Lymphoma Coalition Newsletter – November 2019

U prilogu možete pogledati novi Lymphoma Coalition bilten za Ljeto 2019. Lymphoma Coalition Newsletter – Ljeto 2019 LC Newsletter November 2019

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For Chronic Myeloid Leukemia Patient Group Advocates, CML Advocates Network, November 2019

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, November 2019     The 9th CML-CAB is just around the corner!   On 20 November 2019, 11 expert patient advocates from all continents will meet in Basel / Switzerland for a CML-CAB with Novartis. We are proud to announce that Susanna Schaffert, President of Novartis Oncology, has accepted our invitation to join this 4-hour CAB-meeting.   The...

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MPE Newsletter

  MPE Annual General Meeting (AGM) 2020 Amsterdam, The Netherlands. 6-8 March 2020      MPE activities ESMO 2019 highlights The European Society for Medical Oncology (ESMO) Annual Congress was held from 27 September to 1 October 2019 in Barcelona, Spain. The only myeloma session included in the ESMO programme, called “Defining optimal response in myeloma”, summarised the most important...