Author: Nicole [Germany]

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.

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. CLL Horizons 2021 will be held as a fully virtual conference and will take place from 5-7 November 2021.

Registration is now open! Please click here to access the registration page where you will also find information about who is eligible to attend the conference. If you haven´t completed CLLAN´s 2021 “Global CLL resource mapping & unmet needs survey”, please do so to obtain an additional place at our annual conference! Here is the link to the survey!

In the CLL Horizons section you will find more detailed information and will be able to access the top-line conference agenda! When shaping the agenda, the CLL Horizons planning committee has taken into consideration the feedback gathered from the participants of the previous Horizons conference. Early snapshot results from CLLAN´s 2021 “Global CLL resource mapping & unmet needs survey” have further helped shape the content for this year´s conference. The survey was launched in May 2021 and is still running until 1 August 2021. With that, CLL Horizons 2021 will not just be “another conference” but will be evidencing the real time unmet needs of CLL patient groups and CLL support provision worldwide and thus become an offering that is representative of the needs collected on the ground and the priorities identified in the survey.

Please note that select sessions will be duplicated to allow participation of attendees joining from the southern hemisphere!

Please keep an eye on this news section and watch out for any updates on CLL Horizons.

On 1st of September the CLL community is launching World CLL Day to give those affected by a diagnosis of CLL a much needed voice, raise awareness and improve understanding of the challenges involved in living with CLL. This is an opportunity to come together and raise awareness about the vulnerability of CLL patients and other immune compromised people during the pandemic.

On this first World CLL Day, we wish to send a message of THANKS to those with healthy immunities for protecting our community. During the COVID-19 pandemic many people experienced isolation, fear and the difficulty of keeping safe – an insight into the life of a CLL patient. The umbrella, a form of shield, is chosen as the central campaign image. You can hold it over someone else, emphasising the aspect of proactive choice to protect.

Please make sure to save 1 September in your calendars!

We will soon share the link to the dedicated Word CLL Day website with plenty of information, downloadable materials and online resources. On that page we will also inform you how you can get involved!

Prior to World CLL Day, we are collecting brief quotes to allow patients and carers express what it´s like to live with CLL in this current pandemic, and upload a picture (optional). These quotes will be shared on the dedicated website and Social Media as part of the campaign communications.

Examples of how the quotes (and pictures) will be used – one example with picture, one without:

Please help give patients and carers a voice and allow them to be heard by sharing the following form within your membership: https://www.wclld.org/share-your-voice/

Please spread the word and let others stakeholders and your clinical community know about World CLL Day and that materials will follow in due course to enable participation.

World CLL Day is a great way of kicking off Blood Cancer Awareness Month for the CLL community and will help build momentum towards our next major event involving the CLL community on World Leukemia Day on 4th of Sept and many other activities during the month of September such as World Lymphoma Awareness Day on 15th of September.