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EURORDIS – The Voice of Rare Disease Patients in Europe

  The Voice of Rare Disease Patients in Europe     "Relation fusionnelle" Xia-Gibbs Syndrome, France The Board of Directors and the staff of EURORDIS wish you a Happy New Year! Le Conseil d’administration et toute l’équipe d’EURORDIS vous souhaitent une bonne et heureuse nouvelle année ! Der EURORDIS-Vorstand und alle EURORDIS-Mitarbeiter wünschen Ihnen ein glückliches neues Jahr! La Junta...

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We end 2020 with GOOD NEWS for our members

View this email in your browser Dear Member, Wow! 2020 has been a year we will not forget. I am sure we are all looking to a brighter 2021.   We thought we should close out the year with a newsletter full of GOOD NEWS! Karen Van Rassel Leadership Award for 2020 Recipient: LIPA The Lymphoma Patient Association in Serbia (LIPA) is...

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CML Newsletter, December 2020

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, December 2020 ELN Recommendations 2020: patient-friendly summary   Download the Patient-friendly Summary of the ELN 2020 CML Treatment Recommendations, available now in 9 languages and more are coming: English, Spanish, Croatian, French, Polish, Romanian, Serbian, Arabic and Hebrew. We welcome community translations by member organisations of CML Advocates Network. If you are interested...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI DONOSI PREPORUKE ZA LIJEČENJE OSOBA KOJE ŽIVE S KRONIČNOM MIJELOIČNOM LEUKEMIJOM (KML), NAJNOVIJEG DOKUMENTA IZDANOG OD STRANE CML ADVOCATES NETWORKA (CML AN), I TO NA HRVATSKOM JEZIKU

  Patient-friendly summary of 2020 ELN Guidelines for CML - Published by the CML Advocates Network - The new "European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia" were published in March 2020 in the prestigious journal Leukemia.   In order to improve the information available to patients and support them to access these guidelines, we have developed once more a patient-friendly summary...

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HULL DONOSI IZVJEŠĆE O ODRŽANOM WEBINARU O ISKUSTVIMA TRANSPLANTIRANIH HEMATOLOŠKIH BOLESNIKA AA MDS FOUNDATION

  Webinar o iskustvima pacijenata koji su transplantirani zbog bolesti koštane srži održan je 8. prosinca 2020. godine u organizaciji AAMDS International Foundation. Za mnoge pacijente s bolestima koštane srži, transplantacija je potencijalna mogućnost liječenja. U ovom interaktivnom webinaru nekoliko je pacijenata odnosno roditelja oboljelog djeteta govorilo o iskustvima koja su imali tijekom prolaska kroz postupak transplantacije, kao i nakon...

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HULL PRENOSI OBAVIJEST CML ADVOCATES NETWORKA

For Chronic Myeloid Leukemia Patient Group Advocates Central and Eastern Europe and West Asia region,   December 2020   CML Atlas East Europe is the final product of East Europe and West Asia regional project run by the CML Advocates Network from 1st December 2019 to 31st March 2020. The activity started with a regional survey reaching our Eastern European patient members...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI UICC (UNION FOR INTERNATIONAL CANCER CONTROL) NEWSLETTER NOVEMBER 2020

UICC Newsletter November 2020 The global health community commits to eliminating cervical cancer     UICC and cancer organisations around the world joined in WHO’s official launch of the global strategy to eliminate cervical cancer, a historic milestone in the fight against cancer. Read more Winners of the 2020 Best CEO and World Cancer Day Spirit Awards The recipients of...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) POSTALA JE ČLANICOM KNOW AML GLOBAL NETWORK-A

Hrvatska udruga leukemija i limfomi UHULL) postala je članicom KNOW AML GLOBAL NETWORK-A, međunarodne organizacije koja se bavi oboljelima od AKUTNE MIJELOIČNE LEUKEMIJE (AML). U nastavku zainteresirani mogu pogledati materijale i obavijesti o toj zloćudnoj hematološkoj bolesti, za sada na engleskom, ruskom i španjolskom jeziku. Svjetski dan akutne mijeloične leukemije je 21. travnja. Dražen Vincek   Dear KNOW AML Global...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI OBAVIJESTI I LINKOVE S PREDAVANJIMA NA NETOM ODRŽANOM VIRTUALNOM SUMMITU LYMOMA COALITIONU 2020

    Dear Members, Thank you for making our 2020 Virtual Global Summit a great success. We are so grateful for our members and the insights many of you shared during the Summit sessions. The sessions were recorded and are now offered for members to view at any time on the virtual portal. The recordings, called 'on-demand' sessions, are also available...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI OBAVIJESTI I LINK O KAMPANJI “THE FACES OF MDS” ODRŽANE U OKVIRU MDS WORLD AWARENESS DAY KAMPANJE, A KOJA SE ODNOSI NA OBOLJELE OD MIJELODISPLASTIČNOG SINDROMA

Dear MDSA Steering Committee and General Members, Firstly, we would like to thank everyone who got involved with our MDS World Awareness Day campaign “The faces of MDS”. We have seen high levels of engagement across all platforms, which was made possible by everyone coming together and getting involved. Please find attached, in the WeTransfer link, a summary presentation of...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI OBAVIJEST O ODRŽANOJ 18-OJ (VIRTUALNOJ) KONFERENCIJI CML ADVOCATES NETWORKA KOJA SE ODNOSI NA OBOLJELE OD KRONIČNE MIJELOIČNE LEUKEMIJE (KML)

CML Horizons 2020 Virtual Conference Information   Watch videos of all sessions on demand CML Horizons Virtual Conference 2020 Almost 400 people from 87 countries all over the world registered for the 18th edition of the CML Horizons Conference which took place virtually from 6 to 8 November 2020. The annual meeting of the global CML patient advocacy community is dedicated to the...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI OBAVIJESTI O ODRŽANIM AKTIVNOSTIMA I SKUPU POD NAZIVOM EUROPEAN PATIENT INNOVATION SUMMITU 2020 (EPIS 2020)

Tijekom 2020. godine u organizaciji tvrtke Novartis nastavile su se aktivnosti pod nazivom EPIS, a koje su se, obzirom na epidemiološku situaciju, održale u virtualnom obliku. U nastavku možete pogledati o kakvim se je aktivnostima radilo te se informirati o novostima, digitalnom povezivanju i unapređivanju rada, a što će pomoći samim pacijentima, kao udrugama pacijenata općenito (EPIS 2020 Newsletter 5)....

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI OBAVIJESTI O AKTIVNOSTIMA CML ADVOCATES NETWORKA – COMMUNITY ADVISORY BOARDA

Dana 12. listopada 2020. godine CML ADVOCATES NETWORK CAB održao je svoju 11. sjednicu, odnosno 1. ACADEMIC CML CAB, a sve relevantne obavijesti vezano uz novosti u liječenju kronične mijeloične leukemije, kao i video-materijale koji se na to odnose, možete pogledati u nastavku, odnosno ovdje.     Dražen Vincek "CML-CAB NEWS" – 2nd edition November 2020   NOW AVAILABLE: EXECUTIVE SUMMARY OF...