CLL Matters – December 2020 edition

AGALEMO (Costa Rica): Founded in 1998, in 2018 the organisation started a project in order to learn about CLL and invited physicians to talk about CLL in their usual CML/Myeloma conferences. Two different physicians in two different conferences undoubtedly pointed out that CLL is the worst treated leukemia in Costa Rica. Being the only hematological cancer organisation, AGALEMO feels obliged to also effectively support CLL patients. AGALEMO currently represents 10 members or patients with CLL per year (information as of October 2020). More information about AGALEMO and website / Social Media links are available here.

Leukämie-Online e.V. / LeukaNET (Germany): Leukämie-Online e.V. / LeukaNET is an independent and vital virtual community for leukaemia patients in German-speaking countries. This web-based network provides support to patients by translating and reporting news about new research publications and various treatment options for leukaemia. The web site also provides background information about different forms of the disease, about treatment options and other relevant information necessary to talk to a patient’s physician of choice. Members of the community can participate in a highly frequented discussion forum and ask questions, as well as share their own experience. They can also submit news articles to the web site, review books, suggest web links, or update the patient-friendly glossary on haematology. Leukämie-Online has no commercial interests and is a registered not-for-profit charity in Germany. The web community has been developed, run and financed by patients. Leukämie-Online runs a very active online forum in CLL for German speaking patients and relatives (in DE, AT, CH). It currently represents ~500 members or patients with CLL (information as of October 2020). More information about Leukämie-Online e.V. / LeukaNET and website / Social Media links are available here.

CFP "DROP OF BLOOD" (Ukraine): The organisation 1. facilitates access of every person suffering from CLL to the most advanced treatment options and rehabilitation, 2. promotes psychological support of people with CLL and their families, 3. promotes quality of diagnosis and treatment of people with CLL, 4. attracts the attention of state authorities and local governments and the public to the problems of oncology in Ukraine. CFP "DROP OF BLOOD" currently represents 1000 members or patients with CLL (information as of October 2020). More information about CFP "DROP OF BLOOD" and website / Social Media links are available here.

Hellenic Group of Patients with CLL (Greece): The association was founded in January 2017 by patients from Northern Greece in order to make sure that all CLL patients in Greece will have access to the most updated information, treatments and monitoring. In addition the association strives to give mental support in order to improve the quality of life of patients and caregivers. The Hellenic Group of Patients with CLL currently represents 100 members or patients with CLL (information as of November 2020). More information about the Hellenic Group of Patients with CLL and website / Social Media links are available here.

V Care (India): V Care Foundation is an emotional support group for patients and caregivers who are affected by cancer. V Care is a voluntary organisation. V Care caters to all cancers and has different patient programs. V Care is extremely patient centric, all donations received are totally committed for patient benefit. V Care’s core program is counselling and emotional support. V Care currently represents 100 members or patients with CLL (information as of November 2020). More information about V Care and website / Social Media links are available here.

AMAL (Morocco): AMAL (Association des Malades Atteints de Leucémies) was founded in April 16, 2011 in Marrakech, Morocco. The organisation´s purpose is raising awareness and fighting stigma by organizing patient meetings, producing educational material, organizing activities in the hospital, providing psychological support and sometimes even medication and tests to patients in need without health insurance, clothes, toys, etc. AMAL´s main project is building a patient home to allow patients coming from remote area continue their chemotherapy cure and be treated with dignity. More information about AMAL and link to facebook page are available here.

DLH (Germany): Deutsche Leukämie- & Lymphom-Hilfe e.V. – DLH is the federal organisation of support groups for adults with hematologic maligancies in Germany. It provides programs, activities and services to help, inform and advocates for patients with CLL and has vast experience in the areas of information services, help lines, avocacy and drug assessment. More information about DLH and website are available here.

Lymphoma Action (UK): Lymphoma Action is the UK’s only charity dedicated to lymphoma, the 5th most common cancer. The organisation has been providing in-depth, expert information for over 30 years, helping thousands of people affected by lymphoma. Its mission is to make sure no one faces lymphoma alone. Lymphoma Action provides information, support and education and training for people affected by CLL. Lymphoma Action currently represents 3000 members or patients with CLL (information as of December 2020). More information about Lymphoma Action and website / Social Media links are available here.

CLL Matters

The CLL Advocates Network´s Newsletter

 
 

 

UPDATED STATEMENT ON COVID-19 and CLL-PATIENTS NOW AVAILABLE – INCL. NEW VACCINATION SECTION!

Just in time for the turn of the year, the CLL Advocates Network has released an updated version of its "COVID-19 and CLL patients" statement. The update includes a section on COVID-19 vaccination and a summary of the current expert consensus regarding the question whether CLL patients should be receiving the vaccine or not. The latest version of the statement is currently available in English and German language. More translations will follow in due course. CLICK HERE TO WATCH THE LATEST VERSION OF THE STATEMENT

 
 

 

ANNOUNCEMENT: WEBINAR ON COVID-19 VACCINATION

As part of its capacity building activities, the CLL Advocates Network plans to hold a webinar on “Immunizing the immunocompromised: COVID-19 vaccination in CLL and other blood cancers?” in January/February 2021.

Please watch out for details on our website and our Social Media channels.

 

WELCOME TO OUR 9 NEW MEMBERS!

We are proud to welcome 9 new members to our fast growing Network. The CLL Advocates Network now counts 36 members from 29 countries! To see our full list of members, please click on the link.

And now, please join us in welcoming:

Blood Cancer Society Nepal (Nepal): The Blood Cancer Society Nepal is a registered non-profit organisation since 2008, with focus on Chronic Myelopid Leukemia (CML). However, there is a strong wish with to learn more about CLL in order to being able to provide support and proper advice to CLL patients in Nepal. The organiation organizes awareness programmes and provides advice to patients, e.g. how to manage interaction with the treating doctor. The Blood Cancer Society Nepal currently does not represent any members or patients with CLL (information as of October 2020). More information about the Blood Cancer Society NepalL and link to facebook page 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.

 
 

HAPPY NEW YEAR!

And now, on behalf of the whole CLL Advocates Network team, we want to wish you a good end of the year and a successful start of a happy and healthy 2021. We would like to take this opportunity to thank you all for your ongoing support and for working with us in the fight against CLL, enhancing CLL patient care and improving outcomes! May 2021 bring you delight and happiness in all your endeavours and – above all – good health!
 
 

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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