Category: Uncategorised

We are proud to welcome a new member to our network! Please join us in welcoming our first Estonian member Eesti Leukeemia- ja Lümfoomihaigete Liit (ELLL), Estonian Leukaemia and Lymphoma Patients’ Societ to this big family!

The Estonian Leukaemia and Lymphoma Patients’ Society (ELLL) unites the patients, their carers and medical staff of the malignancies of the blood (i.e. leukaemias, lymphomas, myelomas and other myeloprolofic diseases). It represents > 20 members or patients with CLL.

To learn more about ELLL, please their profile in our members section.

The CLL Advocates Network now counts 45 members from 36 countries!

Click here to see our full list of members.

CLL Horizons, the annual conference of the CLL patient advocacy community, is designed to build capacity in patient advocates and grow their skills on medical and advocacy topics. The 4th CLL Horizons Conference (CLLHZ 2021) was held from 5-7 November 2021 in a fully virtual format. More than 130 participants from 40 countries joined the event.

Renowned experts and speakers from different parts of the world offered interesting medical and advocacy sessions, supporting interactive panel sessions.

Session recordings have been available to registered participants on the conference platform BUT ARE NOW ALSO AVAILABLE HERE!

For more information on CLL Horizons 2021 and to access sessions of previous Horizons Conferences, please CLICK HERE

This webinar is aimed at patients and advocates to provide an overview of latest developments in the treatment of CLL that were presented at The American Society of Haematology (ASH) Conference in Georgia, US, December 2021

We will be joined by:

• Dr Piers Patten – Consultant Haematologist and Senior Lecturer, Kings College Hospital NHS Foundation Trust

This webinar is scheduled for 10 February 2022 at 3:30 pm GMT / 16:30 CET and is being organised as a collaboration between the Chronic Lymphocytic Leukaemia Advocates Network and Leukaemia Care.

Please click here to register: https://us02web.zoom.us/webinar/register/WN_Gn_XT8nMRL6Y-Qy0Jsz-Lw

We are launching this new scribble video which explains what CLL is, what the typical signs and symptoms are, and why early diagnosis matters. The video is now available on our YouTube channel – check it out!

In April 2020 the CLL Advocates Network became a member of WECAN, the Workgroup of European Cancer Patient Advocacy Networks, and informal workgroup of leaders of the 24 pan-European cancer patient umbrella organisations.

In the WECAN section of this website you will now find a plethora of useful resources, among these:

• the Patients in Publications Training Course

• the Virtual Meetings Resource Center

• the WECAN Academy Knowledge Base and

• WECAN´s Guiding Principles for Reasonable Legal Agreements.

For more information on WECAN please visit https://www.clladvocates.net/program/wecan/ or go to the WECAN website at https://wecanadvocate.eu/

On 1st of September the CLL community is coming together to launch the first World CLL Day (WCLLD21) to give those affected by a diagnosis of Chronic lymphocytic leukemia (CLL) a much needed voice, raise awareness and improve understanding of the challenges involved in living with this blood cancer.

This year the campaign’s core messages are focusing on raising awareness about the vulnerability of CLL patients and other immune compromised people during the COVID-19 pandemic.

We are pleased to announce that the dedicated campaign website is now live with campaign materials at https://www.wclld.org where you can learn more about this first ever World CLL Day, how to get involved and enable access to downloadable campaign materials for use in your Social Media posts and other online channels. World CLL Day Social Media materials have been created for you in different languages (English, French, German, Italian, Spanish, and Czech).

To ensure World CLL Day has maximum impact, please DO NOT post campaign materials prior to Wednesday, 1 September 2021! Materials are being provided exclusively to help members and supporters prepare their own communications around World CLL Day and shape their local activities.

This is an important day for the CLL community and especially for those affected by a diagnosis. Chronic lymphocytic leukemia is the most common of all leukemias and is poorly understood. Let’s work to change this together on September 1^st.

WHAT CAN I DO NOW AND DURING THE RUN UP TO SEPT 1st?

• Save the date
• Download materials to prepare your communications plan for WCLLD21
• Download social media campaign banner to tailor your social media channels for WCLLD21
• Spread the word to let other stakeholders and your clinical community know about WCLLD21.
• Please help give patients and carers a voice by pointing them to the share-your-voice campaign page where brief quotes are being collected to add to campaign Social Media materials ahead of September 1^st.

WHAT CAN I DO DURING WCLLD ON SEPT 1st?

• Join the discussion on Twitter, Facebook and Instagram Social Media channels using WCLLD21 materials to amplify awareness
• When creating your WCLLD posts and posting on Social Media, please ensure you include the hashtags #meandmyumbrella, #WCLLD21 and #immunitycommunity to maximise messaging amplification and the reach of the campaign.
• Add to WCLLD campaign activity by taking a selfie with an umbrella (be creative) then add to your post and share on social media including hashtags #meandmyumbrella  #meandmyumbrella, #WCLLD21 and #immunitycommunity
• Help to spread the word and amplify your posts by tagging others in your network when you post and include hashtag addresses in some posts to reach wider discussions such as #BloodCancerAwarenssMonth

Thank you for coming together during WORLD CLL DAY at this challenging time for CLL patients. Let’s start off Blood Cancer awareness Month by making CLL visible on September 1st and cement this day in everyone’s diaries for the future.