The CLL Advocates Network´s Newsletter – August 2020

 

CLL Matters

The CLL Advocates Network´s Newsletter

WELCOME BY OUR CHAIR

It is my pleasure to welcome you to the 1st issue of “CLL Matters” – the CLL Advocates Network´s Newsletter (CLLAN).

The CLLAN Steering committee recognises the immense pressure of increased demands and reduced services the COVID-19 pandemic has caused our community. It is our hope that – as a network – we will continue to share the lessons learned and keep each other informed in these times of uncertainty, restriction and budget constraint. As patient advocates and leaders of patient advocacy groups, we need to work together and support each other more than ever. CLLAN activities and priorities are ultimately shaped by your input and feedback. Please keep this coming to ensure we understand your priorities to aid the network and support the community.

In this edition we:

  • Introduce you to World Leukaemia Day (WLD) to aid the network to work together and magnify Blood Cancer Awareness Month (BCAM) awareness raising opportunities for CLL and national activities
  • Proudly announce the launch of our new and refreshed website
  • Introduce COVID-19 and other interesting resources
  • Share news from our global members
  • Present CLLAN´s plans for the second half of 2020 and 2021
  • Update you on where we are in the planning of our next CLL Horizons Conference, and what we are offering to bridge the time until then.
  • Share with you our Conference Summary Report of our CLL Horizons 2019 conference (Edinburgh / Scotland, 19 to 21 September 2019)

World Leukemia Day (WLD) on 4th of September (during Blood Cancer Awareness Month, BCAM) is a great opportunity for us all to get the CLL awareness ball rolling and bring us together, to show unity, raise awareness of leukaemia and its signs & symptoms in general –  and what this means for Chronic Lymphocytic Leukaemia (CLL) patients in particular.

We hope you find this newsletter useful and look forward to working together as we build for WLD and BCAM.

Thank you for your continued dedication to advocate for patients and the difference you are making for so many at a time of great difficulty for patients and yourselves.

Nick York
(CLLAN Steering Committee Member & Interim Chair

WHAT ARE YOUR PLANS FOR BCAM 2020?

Since 2010, non-profit organisations, charities and support groups conduct campaigns and activities on Blood Cancer Awareness Month (BCAM) to increase awareness and public understanding about all types of blood cancers.
We would like hear about your plans for the upcoming BCAM in Sept! Share your plans so we can help promote your activities in our comms channels for dissemination across the network. Please send information and illustrations to info@clladvocates.net and share your local activity with us via and . Let´s work together to raise awareness of CLL and its challenges! Let´s action change together!
Thanks for getting involved and joining us in the fight against blood cancer.

support #WLD2020 / #WorldLeukemiaDay

September 4th is World Leukemia Day (WLD), a global awareness day that has been 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.

In our role as global network and international collective representative of CLL patient groups we as CLLAN are committed to our objective: enhancing CLL patient care and improving outcomes. Let´s use WLD2020 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.

Help us achieve this goal by sharing content & news from your countries, liking and retweeting but also actively posting on Social Media, supporting us with translations to your local language, and spreading the word by informing your membership / patients about #WLD2020 or #WorldLeukemiaDay.

There are online resources available including all social media artwork as well as informative graphics to share on the run up to the day and on the day itself, you can find all the information and downloads here. Furthermore, here is the Social Media content with examples for social media posts – please make use of it to promote  WLD2020 on Social Media.
 
To encourage your members / patients, you can use our letter template and adjust (and potentially translate it) to promote and inform about WLD2020.
 
Here we are presenting four very practical and easy to implement ideas:

  • Share your leukemia story: Encourage others to share their leukemia story on social media and use the hashtags #WLD2020 or #WorldLeukemiaDay. More information is available at www.worldleukemiaday.org
  • Share a ‘spotty selfie’: Dig out your spotty clothes and share your spotty selfie’ on social media with the hashtag #WLD20 on September 4th to show your support.
  • Spread the word: Help raise awareness of the symptoms of leukemia by using our social media graphics and sharing these across your social media platforms along with the hashtags #WLD20 #worldleukemiaday. All graphics are available via www.worldleukemiaday.org
  • Use our World Leukemia Day Facebook frame (this will only be available on September 4th)

Thanks for helping us spread the message of awareness. Thanks for helping us strengthen patients’ voice. Thanks for helping us advocate for CLL patients around the globe!

1st CLLAN Webinar on 30 September

R&D, health policy and the imminent needs of cancer patients do not stop with the pandemic. Powerful patient advocacy, patient engagement and patient input are more important than ever. CLLAN is currently implementing a series of digital workgroups that shall function as a digital alternative/accompaniment to the traditional CLL Horizons in-person capacity building model, providing topical CLL sessions as webinars rather than in an in-person CLL Horizons 2020.
The first workshop will be on “Developing collaboration between patient groups and clinical groups – working together to improve patient outcomes.” The panellists of this first webinar are:

  • Pierre Aumont (SILLC, France) 
  • Felice Bombaci (AIL, Italy)
  • Nick York (Leukaemia Care, UK)
  • Prof. Christopher Fegan (Director – School of Medicine – Cardiff University, UK)
  • Dr. Renata Walewska (Haematologist – Royal Bournemouth Hospital; chair of the UK CLL Forum, UK)

The meeting will be hosted & moderated by CLLAN Steering Committee member Brian Koffman (CLL Society, USA) and is held as part of our Blood Cancer Awareness Month (BCAM) activities.

Date & time: 30 September (18:00-19:45 CET)

Further digital workshops will come as a continuation of CLL Horizons 2019 workshop sessions.

new website ABOUT TO GO LIVE!

For Blood Cancer Awareness Day we are launching our brand new website with many interesting resources. The new website is still in development and will be live in a few days – so please watch out for it at www.clladvocates.net. We hope you will like the new website with a fresh look, easy to access information and valuable resources.

CLL SAVE THE DATE: CLL Horizons 17-20 September 2021 Krakow

The next CLL Horizons Conference is in planning and set up in Krakow for September 2021 to coincide and collaborate with the next iwCLL international conference. Given the current situation, it is difficult (if not impossible) to predict if a regular in-person conference will be possible for all interested participants in 2021. We might have to consider a combination of both digital and in-person to make the conference more widely available for immune-compromised participants. 
Since there will not be an in-person CLL Horizons Conference in 2020, we plan to carry out digital workshops that follow-up from CLL Horizons 2019 sessions and digital capacity building webinars (please refer to article above for details).

CLL HORIZONS 2019 AND CLLAN activities and priorities 2020/2021

We are happy and proud to share the attached Conference Summary Report of our CLL Horizons 2019 conference held in Edinburgh / Scotland from 19 to 21 September 2019. Besides an Executive Summary, the report includes the delegates´ feedback to the Conference. Your feedback has certainly helped the CLL Advocates Network´s Steering Committee shape initiatives and determine priorities and strategies. However, the current pandemic has forced us to prioritise other projects and tasks to suit the current landscape. Here is an outline of CLLAN activities and priorities 2020/2021.

MEMBER NEWS

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.

UK: Leukaemia Care´s COVID-19 welfare program

Our UK-based member Leukaemia Care, conscious about the fact that – besides health – financial wellbeing is also crucial, has established a welfare program to help individuals with the economic impact of for those worried about their financial situation in connection with the pandemic. Besides offering a blog that answers questions on sick pay or job retention and provides general financial information (e.g. if you can´t pay your mortgage, rent or bills, etc.), patients and relatives can contact the Welfare Officer at Leukaemia Care who will be able to advice on specific cases. Click here for more information.

USA: The CLL Society´s new Expert Access™ Program

The CLL Society in collaboration with InfiniteMD, an online second opinion service that uses live, synchronous video technology to match patients around the world with top US-based medical specialists, has recently implemented a free-of charge program that offers US-residing CLL patients worried about their CLL access to CLL expertise through a HIPAA compliant (Health Insurance Portability and Accountability Act) online video consultation to gain a 2nd opinion. The program promises easy qualification, easy application and convenience since there is no need to leave the house. Click here for more information.

NEW ZEALAND: The CLLANZ´s inaugural CLL seminar

The CLL Advocates NZ in collaboration with LBC is hosting its inaugural CLL seminar to be held in person in Auckland and online on Zoom. Three top haematologists will present and take questions on CLL disease, diagnosis and management, including the latest on "watch and wait" management, and the latest international and local developments in treatment. Click here for more information.

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!