DONOSIMO BILTEN CLL ADVOCATES NETWORKA ZA MJESEC RUJAN 2023.

U nastavku možete pronaći novosti koje se odnose na kroničnu limfocitnu leukemiju (KLL).

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CLL Matters

CLL Advocates Network Newsletter

Let’s get ready for World CLL Day on 1 September!


WORLD CLL DAY 2023 is only few weeks away! 

Join us on World CLL Day 2023 as we shine a spotlight on the mental health challenges faced by patients living with chronic lymphocytic leukemia (CLL). Under the hashtags #WCLLD23 #WithTeamCLL and #MentalHealth, we aim to raise awareness and support patients impacted by this condition.

Visit the dedicated World CLL Day website to access valuable information, downloadable materials, and online resources, and discover how you can get involved in the lead-up to 1 September 2023.

To ensure you’re fully prepared, we’ve put together a Toolkit in the lead-up to #WCLLD23.

What to do in the lead-up to WCLLD 2023: 

By mid-August this Lead-Up Toolkit will be completed by additional assets to be used on 1 September, i.e. Social Media Content Plan (including translations of select assets) and visuals.

World CLL Day is a great way of kicking off Blood Cancer Awareness Month for the CLL community. It will help build momentum for the CLL community on World Leukemia Day on 4 September and World Lymphoma Awareness Day on 15 September

Please spread the word and let other stakeholders and your clinical community know about World CLL Day and ask them for their active participation by building WCLLD into their communication plans!

THANK YOU FOR JOINING WORLD CLL DAY 2023 AND HELPING SPREAD THE MESSAGE OF AWARENESS!
 

CLLAN´s Survey Comparison Report and Recommendations has been launched

We are pleased to announce that we have launched the long-awaited Survey Comparison Report “CLL patients and Carers: Unmet needs in Healthcare and Support” which is now published and released on our website.

The report provides a comparison analysis of some findings from three separate surveys conducted in 2021 and 2022 of individuals with CLL and their carers about their experiences, and with patient organisations from across the globe about CLL resources provided and unmet needs. Based on the resulting recommendations, CLLAN has created a strategic plan of priority activities to tackle the identified unmet needs.  

The analysis was based on the results of the CLL Patient Advocacy and Support Survey (CLL-PAGS) conducted by CLLAN in 2021, the Global Leukemia Patient Experience Survey (GPES) conducted in 2021/22 and the Global Leukemia Carer Experience Survey (GCES) conducted in 2022. The latter two were conducted in collaboration with two partner networks: Acute Leukemia Advocates Network (ALAN) and CML Advocates Network (CMLAN). For the latter two surveys, the analysis concentrates on data relating to CLL patients only (a subset of the wider data across different leukemia types).

Click here to access the FULL REPORT as well as the EXECUTIVE SUMMARY and a set of SLIDES summarizing key findings.

We wish to thank all those groups and individuals that took the time to complete any of the three surveys that allowed us carry out this comparison analysis. These reports are YOUR reports! Thank you for contributing to these important pieces of evidence!

 

World Leukemia Day 2023 on 4 September


World Leukemia Day on 4th September is a global campaign run in collaboration by patient groups from across the globe. CLL Advocates Network (CLLAN) is one of the initiators.

It’s the one day of the year people from all around the world come together to help raise awareness of leukemia. This year’s World Leukemia Day theme is “What does leukemia mean to you?” Despite the fact that all leukemias present differently and affect patients in a different way, on this World Leukemia Day we want to come together with groups across the globe to advocate for all leukemia patients, raise awareness of the typical symptoms and bring together the international leukemia community.

We hope that by making people more aware of the signs and symptoms of leukemia, we will encourage them to get to see a doctor at first symptoms. This will help reduce the numbers of preventable leukemia deaths across the world and improve patients´ outcomes. 

Find out more about getting involved this World Leukemia Day:


“We might speak different languages, but leukemia knows no borders.” 
#WLD23 #WorldLeukemiaDay
 

Register for IWCLL Congress, 6-9 Oct 2023 – discount for patient advocacy organisations and special offer for CLLAN members!


The International Workshop on Chronic Lymphocytic Leukemia (iwCLL) is holding its annual meeting 6-9 October 2023 in Boston, Massachusetts, United Stated. Thanks to the hybrid character of the event, virtual attendance is possible. Patient advocacy organisations can benefit from a special discount on the registration fee if registering via CLLAN. Furthermore, CLLAN is covering the registration costs for its members.

For more than 40 years, the iwCLL has focused on bringing together international leaders in the understanding and treatment of chronic lymphocytic leukemia (CLL). The 2023 assembly will present the most up-to-date results emerging from clinic and laboratory-based research about the pathobiology and treatment of this still incurable disease. The information presented will focus on the development, progression, treatment, and evolution of CLL. CLLAN has been invited to participate as Faculty for Session 10 (“Global Perspective on CLL Management – Real World Data and Patient Experiences” – Session Co-Chair: Anna Schuh, MD, PhD), and has furthermore submitted an abstract entitled “Global Perspectives through multi-stakeholder mapping of lived experience with CLL – insights to improve equity, services, and unmet needs”. The abstract has been accepted for poster.

Patient advocates are entitled to attend this event in-person or virtually. If you register via CLLAN, you will be entitled to a 50% discount from the usual rate ($200 instead of $400 if registering before Sept 2029, $250 instead of the usual $500 if registering after Sept 30). These rates are applicable for virtual or in-person attendance. For members of the CLL Advocates Members, CLLAN is willing to cover the registration fee (one grant-recipient per organisation allowed only!).

If you are representing a patient advocacy organisation (no matter if a member or not of CLLAN) and are interested in attending this important congress, please complete the online form by 15 September so that we can consider you for the group registration. 

For more details on the congress, please visit the iwCLL2023 congress webpage.

 

65th ASH Congress, 9-12 Dec 2023 – free registration for patient advocacy organisations!


The 65th ASH Annual Meeting and Exposition will take place in San Diego, California, and online, December 9-12, 2023. This is one of the most important (if not THE most important) global event, and the best source for latest updates on hematology. ASH is again kindly offering free registration to non-profit patient organisations. We can only encourage you to take advantage of the ASH organizer´s offer (which has become a reality thanks to the persistent efforts of leading advocates).

Participants will have the opportunity to attend the meeting in-person or virtually. In-person registration includes complimentary access to the annual meeting virtual platform through January 1, 2024. Access to the virtual platform will begin on December 6, 2023.

Only one (1) recipient per each non-profit patient advocacy organization will be approved!

The application will require the completion of an online form that outlines the qualifying credentials to be considered, along with a CV resume or bio sketch, and a signed letter from the organization on its letterhead that specifies the following:

  • That the organization is a non-profit patient advocacy organization.
  • The applicant’s role with the organization.
  • That the applicant is the sole representative that will be applying.

At the beginning of each month, ASH staff will review the applications received to date, select meritorious recipients, and inform the approved applicant how to proceed with registration.

Here is the Link to apply.
 
With this link you can apply for a complementary registration for the on-site event OR for the virtual meeting (during the application process you are asked which option you prefer).

This is a unique opportunity for all advocates, and we strongly encourage you to participate in the ASH Annual Meeting and Exposition whose commitment is to foster knowledge-sharing across the global oncology community to promote the delivery of high quality and equitable cancer care as we collectively work to conquer cancer. 

For more details, please visit The American Society of Hematology (ASH) website.

 
 

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