HULL SUDJELOVAO NA MEĐUNARODNOJ KONFERENCIJI CML AN HORIZONS 2022. U MAROKU – SAŽETAK PRVOG DANA
Donosimo najvažnije teme i rasprave prvog dana CMLAN Horizons 2022.
Dear members and friends of the CML Advocates Network,
Day 1 of CML AN Horizons 2022 has launched! It is wonderful to be back together again, and for the first time in Africa. Discussion highlights so far have included:
- Starting off with a warm-up session on CML 101 by Jerry Clements, telling us everything we need to understand CML
- Šarūnas Narbutas & Rod Padua introduced the event, setting out the plan for the 20th meeting of CML AN Horizons over the next few days
- A very warm welcome was given by Bahija Gouimi to the beautiful country of Morocco and an overview of our gorgeous host city of Marrakesh, the red city.
First sessions covered some brilliant examples of best practice in advocacy from our members worldwide. We learned about the wonderful work of Bahija and the building of DAR AL AMAL – the House of Hope – hospital hotels for patients and families in Marrakech. Dar al AMAL is now fully functioning and can house up to 30 patients and caregivers at a time.
Further inspiration was gained from the great results in Columbia seen with the SEBAS app, a patient need reporting solution that helps identify and address barriers to treatment. To date, SEBAS has helped resolve over 200 barriers to treatment, usually within the relatively short time frame of 5 working days.
Milica from HEMA in Macedonia then introduced us to the innovative Virtual Counselling Centre offered in their region, offering patients in Macedonia virtual therapy sessions, nutritional advice and yoga sessions dedicated especially for people with hematological cancers.
The morning session culminated with an inspirational story of a united response to support CML patients in Ukraine after the outbreak of war. Advocates Cornelia Borowczak, Jelena Čugurović & Lidija reported on how they addressed the lack of medication with an innovative donation plan. Sometimes ‘exceptional circumstances need exceptional measures!
The afternoon sessions kicked off with a brilliant scientific talk on CML treatment strategies and new available agents from Andreas Hochhaus and Jane Apperley, followed by a steering committee update from our executive director Dennis Costello – welcome new steering committee members Jerry and Yelena!
And to finish off, attendees participated in the first CMLAN resource market place – 5 live talks on new resources launched by the network for advocates, including presentations on the new ELN platform and CMLAN website, the launch of ‘Know your CML’ app, the CML Life website, World CML Day activities and a CAB Update.
More exciting activities coming tomorrow!
Hrvatska udruga leukemija i limfomi
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