CLL Matters - October 2020 edition

 


CLL Matters

The CLL Advocates Network´s Newsletter

 
 

 

RECORDING OF OUR 1st CLLAN WEBINAR ON 30 SEPTEMBER NOW AVAILABLE!


The first non-CLL specific workshop was on “Developing collaboration between patient groups and clinical groups – working together to improve patient outcomes” and was held on 30 Sept 2020 as part of our Blood Cancer Awareness Month (BCAM) initiatives. It was an engaging experience with an international panel consisting of 4 experienced representatives of the advocacy community and 2 UK-based clinicians who all shared great insights and best-practice examples of successful collaboration between these two groups. CLICK HERE TO WATCH THE FULL RECORDING!

Besides general examples of collaboration on the national (e.g. primary care education, spot leukaemia campaign, national BCMA activities) and international level (such as patient advocacy tracks in medical congresses, real world evidence production, patient advocates´ involvement in research to ensure a research that is closer to the patients´ needs and the creation of networks of excellence, etc.), the expert advocates presented special examples of collaboration during COVID-era. For example, the Israeli group “Flute of Light” offers a patient transportation service to help patients reach the hospital and get their regular check-ups despite COVID-19 restrictions and obstacles related to these. Other groups offer regular webinars to inform their members in need while F2F meetings are not possible. Prof. Chris Fegan shared interesting insights from survey findings of patients’ challenges and COVID outcomes. The individual presentations were followed by an interesting Q&A session.

A big THANK YOU goes to our speakers Dr. Renata Walewska (UK), Prof. Christopher Fegan (UK), Giora Sharf (Israel), Nick York (UK), Pierre Aumont (France) and Felice Bombaci (Italy) for accepting our invite and kindly sharing their experience, as well as to Dr. Brian Koffman (USA) for his great moderation.

FOR MORE INFORMATION PLEASE VISIT THE CAPACITY BUILDING SECTION ON OUR WEBSITE!

Further digital workshops will come as a continuation of CLL Horizons 2019 workshop sessions. Details will be announced as they become available.
 
 

 

#WLD20 REACHING 10.8+ MILLION ONLY ON TWITTER


September 4th was World Leukemia Day (WLD), a global awareness day designed by Acute Leukemia Advocates Network (ALAN), CLL Advocates Network (CLLAN), CML Advocates Network (CMLAN) and Leukaemia Care to raise awareness of leukemia and the signs and symptoms.

The CLL Advocates Network helped to raise awareness of the challenges that CLL patients are facing and about the importance of 1) timely diagnosis and 2) appropriate access to information and treatment – both are crucial to improve day-to-day Quality of Life and outcomes of CLL patients worldwide.

#WLD20 was a fantastically successful event and reached great numbers, e.g. more than 10.8. million people were reached on twitter alone! CLLAN aided the success of this event as one of the main influencers.

Thanks to all those supporting the campaign by liking, retweeting and actively posting on Social Media!
 

 

WELCOME TO OUR 3 NEW MEMBERS!


We are proud to welcome three new members to our fast growing Network. The CLL Advocates Network now counts 27 members from 23 countries! To see our full list of members, please click on the link.

Please join us in welcoming:

ALMA / ARGENTINA: ALMA is a patient organization based in Buenos Aires / Argentina whose mission is to provide emotional and practical support to leukemia patients. To fulfill our mission we develop different programs, the principal ones being:
  • Comprehensive Patient Education: different professionals provide workshops on diagnosis, types of treatments, monitoring studies, adverse effects management, looking for an expert patient.
  • Spreading Life: we hold patient meetings in different cities of the country, forming ALMA patient groups.
  • Emotional containment: coordinated by our psychooncologists, we give the professional support that patients require.
  • Advocacy support: we defend patients' right in relation to their treatments and studies.
ALMA currently represents 68 members or patients with CLL (information as of September 2020). More information about ALMA and website / Social Media links are available here.

LYPA / SERBIA: The
Lymphoma Patients’ Association LYPA is a Serbian Organization for lymphoma/CLL patients, family members, and friends. LYPA will continue to be the leading national Lymphoma patient association and we will try to improve the quality of life of lymphoma patients.

Our objectives are:
  • Raising the level of knowledge about lymphoma
  • Giving information to the patients and supporting them
  • Advocating for the rights of lymphoma patients
  • Pproviding better access to new treatments and clinical trials
  • Promoting a healthy way of life
by providing high-quality information, organizing meetings, lectures, and training events, and sharing the inspirational story of our survivorship. We encourage, motivate, and inspire not only lymphoma patients but also every other audience.

LYPA currently represents more than 200 members or patients with CLL (information as of September 2020). More information about LYPA and website / Social Media links are available here.

CLL SUPPORT / UNITED KINGDOM: CLL Support is a patient led UK charity. Our mission is to support and empower CLL patients, their families and their carers. We hold regular meetings around the UK where patients and their supporters can meet other patients and hear about the latest developments in CLL treatment from the top clinical experts in the country. During the Covid-19 crisis, we have replaced our conferences with free video talks from clinical experts. We host a very active on-line forum (healthunlocked). Campaigning and advocacy is a major part of our activities. We speak on behalf of CLL patients to government bodies including the National Institute for Care and Health Excellence (NICE) to ensure that new treatments are available. We join with other charities to campaign for the recognition of leukaemia to be as important as other cancers for funding and research. We send a regular and informative email newsletter to members giving updates on our activities and also patient stories and produce informative booklets for newly diagnosed patients and various leaflets to help patients understand their condition. Last but not least, we operate a helpline that is staffed by volunteers, all of whom have personal experience of CLL either as patients or as partners of patients.

CLL Support currently represents 3,000+ members or patients with CLL in UK and 15,000+ on worldwide Forum (information as of October 2020). More information about CLL SUPPORT and website / Social Media links are available here.

If your organisation is not yet a member of the CLL Advocates Network but wishes to be part of our global network, please check out the membership section on our website and submit your member application. In this moment in time when charities and patient organisations are challenged by reduced fund raising and other needs, it´s a priority to come together, aid each other, and learn from each other. So please become a member
of the CLL Advocates Network, engage with CLL community leaders from aross the world, and share your challenges and good practices.
 

In this section we are featuring members´ activities and CLL-related events taking place in the various regions. We wish this section to become an integral part of every newsletter and encourage you to share what is happening in your country on a continuous basis so we can all learn and inspire each other. Please send information and photos of events, people and/or other illustrations that might catch the eye to info@clladvocates.net.

 

CZECH REPUBLIC: Diagnóza leukemie attending the Czech CLL Study Group Annual Meeting – a best practice example of collaborations with clinical groups!


Our Czech member Diagnóza leukemie organized a face-to-face CLL patient educational event that was held on September 5, 2020 in Ostrava City. The University Hospital in Ostrava locates the specialized hematology clinic with the largest proportion of CLL patients in the country, this being the reason for placing educational activities of Diagnóza leukemie also in this region. Lecture topics included novel therapies in 2020 and CLL treatment in clinical trials. Diagnóza leukemie has trained a small team of 3 nurses, since the time of their studies, to act as hostesses during our events, so we have patients, caregivers, nurses and doctors in the room. Diagnóza leukemie uses virtual platforms for communication within patient networks, to attend virtual conferences and in its role as hematology representative within the Patient Advisory Board of the Czech Minister of Health. We are not planning to hold webinars addressing individual patients because we understand that patient education especially for the elderly population needs to be “wrapped up” in SUPPORT of the patient, atmosphere of the event.
 

ISRAEL: Flute of Light´s activities during the pandemic, directly related to CLL patients

  • In the last 5 years we used to have a CLL patients face to face meeting every 2 months. We hosted several CLL experts who spoke on various medical topics related to CLL, from diagnostic tools and risk factors to new landscape and treatment in CLL. Our last face to face meeting was held in March 2020. As the COVID started spreading in Israel we had to move our activities to virtual mode. We started by doing webinars on how patients should behave during the pandemic in regards to arriving to hospitals, switching appointments to virtual instead of face to face, continue treatment plan etc. Then we added many webinars either on Zoom or Facebook live focused on CLL, alternative treatments, Psych-social support etc. This was done one webinar a week and we had thousands of viewers either live or on the recording.
  • Publication of guideline for CLL patients during the pandemic: we translated and published international guideline that were published by the CLL Advocates Network and other groups and also asked our local CLL experts to develop an Israeli guideline which we published on all our social media channels and emailed to our registered patients.
  • Support for a very interesting CLL research project in Israel: One of our CLL local expert, Dr Shirley Shapira did last year a pilot study with CLL patients on Wait and Watch. She treated a group of these patients with relaxation techniques like meditation and other and found that there was positive influence on the disease load and blood counts were improved. She presented her project at the annual Israeli Hematologists meeting, and we decided to support the expansion of the study to more patients. We took upon ourselves to fundraise and do all the logistics of the project and indeed we raised enough funds to expand the research to 30 more patients who are now receiving a weekly alternative treatment and monitored for their blood counts.
  • Transportation for patients: The pandemic brought another challenge to some patients who do not have a private car. How to get from home to hospitals and back. Since most patients have weakened immune system they are recommended not to use public transportation. Our patient organization has taken the task to organize private taxis for these group of patients. We contracted a national taxi company like UBER and we have been supplying this service since April and it is ongoing. Again we have raised funds for the project in the amount of 75,000 Euros from most Pharma companies in Israel. From April till end of October we have done close to 900 taxi rides for more than 200 patients all over the country. The project will continue as long as needed. It is done with collaboration of all blood cancer patients organizations in Israel and with the Israeli Hematologists association. The project is published in all 22 hospitals in Israel through the social workers, nurses and Drs and has received great positive feedback from all stakeholders, raising the awareness to our organization.
  • Another challenge for patients during the pandemic is the need to stay at home most of the time without meeting family and friends. In order to ease the psychological effect of this issue we have started to organize special virtual workshops for patients. 2 examples are story writing workshop done by a famous writer and a Photo workshop. The patients are writing about their journey with the disease and some of the stories are published on our social media, and are very emotional and moving. We are now organizing the first Photo gallery of pictures taken by our members at the workshop and it will be shown on our website https://halil.org.il/ and on social media.
 

SERBIA: LYPA´s online consultation services for lymphoma and CLL patients during the pandemic


Living with lymphoma and CLL and its treatment is so stressful. The COVID19 pandemic has added another layer of anxiety, fear, and uncertainties for people already dealing with diseases. The biggest concern for our patients, when many of the hospitals turned into COVID hospitals and referred lymphoma/CLL patients to other clinics and doctors, was how to reach out to professional help if they need it. In cooperation with IT-experts, LYPA created a specially designed platform for online consultation that offers patients access to lymphoma/CLL experts (7 doctors), nutritionists, and psychologists through online video consultation. There is a form to register. Apart from personal data, the patient can submit medical records. Once the patient registers, he/she gets a time slot and link to connect for 30-minute 1:1 video consultation with the chosen doctor. The service is completely free for patients. More than 150 patients benefitted from this service only in the period June to August 2020.
 
 

NOT YET A CLLAN MEMBER?


Become a member and benefit from the many benefits! Please refer to our website to learn more about the types of members and member rights.

In this moment in time when charities and patient organisations are challenged by reduced fund raising and other needs, it´s a priority to come together aid each other, and learn from each other. So please become a member of the CLL Advocates Network, engage with CLL community leaders from across the world, and share your challenges and good practices.


We look forward to receiving your member application and welcoming you to our network!
 

 

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