Author: Admin Coordination

The big day has arrived!

We are delighted to announce that CLL Advocates Network (CLLAN), in partnership with AstraZeneca, has worked with global experts and advocates to develop a White Paper titled “Compromised: Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia (CLL)” which we are launching today.
 
As we all know, the COVID-19 pandemic has shone a spotlight on the varied immune challenges, in addition to infections, that people with CLL face. This forms a major part of managing day-to-day life with CLL and has long been overlooked in CLL management and care.
 
We are immensely proud of the paper which sets out recommendations needed to achieve improvement in the management of immune challenges for CLL patients.
 
The report highlights the following 4 key recommendations:

1. Creating global clinical guidance for monitoring and managing immunosuppression in people with CLL
2. Ensuring that immunocompromised status is flagged in the patient health records of people with CLL
3. Instigating education and awareness raising activities amongst healthcare professionals, especially primary care physicians
4. Making shared decision-making and personalised approaches commonplace in the management and care of people with CLL

We are incredibly grateful to all the individuals and organisations who have contributed to co-create this one of a kind new White Paper.
 
Please spread the word with your members, colleagues and wider network!

To read the full white paper please click here: 
www.clladvocates.net/whitepaper-CLL-immune-challenges/

We are proud to welcome a new member to our network! Please join us in welcoming ASOPALEU, our first member from Guatemala (Central America)!

ASOPALEU is an apolitical, secular non-profit organization based in Guatemala (Central America) and committed to educate, empower, and support individuals affected by leukemias (mainly CML but also other types of leukemia such as CLL) and GIST. They foster partnerships with the medical community, as well as patients and their caregivers. ASOPALEU actively advocates for the involvement in government agencies and public hospital authorities. ASOPALEU is a member of renowned alliances and international umbrella organizations.

ASOPALEU collaborates with local organizations to ensure that essential medications required by patients with chronic diseases, especially those categorized as “high-cost,” are included in the government’s list of basic medicines. Their collective efforts are aimed at safeguarding the quality and efficacy of these crucial medications, thereby meeting the needs of patients.

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

The CLL Advocates Network now counts 50 members from 41 countries!

Click here to see our full list of members.

We are proud to welcome a new member to our network! Please join us in welcoming our first member from Slovenia “Slovenian lymphoma and leukemia patient association, L&L” to this big family!

The Slovenian lymphoma and leukemia patient association, L&L, has more than 750 patients suffering from lymphoma, leukemia, multiple myeloma, myelodysplastic syndrome, and other forms of blood disorders, as well as their carers, experts and supporters.

With several supporting programs, projects and campaigns aimed at the early detection of blood cancers, access to state-of-the-art diagnostics, treatment, and comprehensive care of patients with blood cancers, as well as good cooperation with the health professionals, decision-makers and media, the L&L organization has managed to set the gold standard for modern advocacy for patients in its 15 years of operation in Slovenia.

To learn more about Slovenian lymphoma and leukemia patient association L&L, please visit their profile in our members section.

The CLL Advocates Network now counts 49 members from 40 countries!

Click here to see our full list of members.

On 30 March 2023, CLLAN (CLL Advocates Network) collaborated in the joint initiative with ALAN (Acute Leukemia Advocates Network), CMLAN (CML Advocates Network) and UK charity organisation Leukaemia Care, and hosted fourth webinar in the series.

This webinar brought together international patients with ALL, patient advocates and stakeholders from different countries around the globe. The aim of this educational webinar was to give patients and advocates an overview of how ALL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international haematology conferences EHA22 and ASH22. What is new and what does this mean for patients?

We were joined by:

Moderator:
Nick York – Patient Advocacy Healthcare Liaison Officer, Leukaemia Care (UK)

Speakers:
Dr Tobias Menne – Consultant Hematologist, Clinical Director for Research, Honorary Senior Lecturer Newcastle University (UK)
Anne – Pierre Pickaert  – Patient Advocate, Acute Leukemia Advocates Network (FR)

Webinar recording:

A big thank you to all patient and advocates who were able to attend live, and to our panellists for their excellent presentation, insight and for sharing their wealth of experience.

Acknowledgement

We would like to thank the following for their support:

On 28 March 2023, CLLAN (CLL Advocates Network) collaborated in the joint initiative with ALAN (Acute Leukemia Advocates Network), CMLAN (CML Advocates Network) and UK charity organisation Leukaemia Care, and hosted third webinar in the series of four.

This webinar brought together international patients with CML, patient advocates and stakeholders from different countries around the globe. The aim of this educational webinar was to give patients and advocates an overview of how CML is treated today. Current approved therapies and their place in the treatment algorithm and management approaches long term. What  were the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international haematology conferences EHA22 and ASH22? What does this mean for patients?

We were joined by:

Moderator:
Nick York – Patient Advocacy Healthcare Liaison Officer, Leukaemia Care (UK)

Speakers:
Prof Andreas Hochhaus – Consultant Hematologist, Director Department of Hematology and Internal Oncology University Hospital Jena (DE)
Lisa Machado – Patient Advocate, CML Advocates Network (CA)

Webinar recording:

A big thank you to all patient and advocates who were able to attend live, and to our panellists for their excellent presentation, insight and for sharing their wealth of experience.

Acknowledgement

We would like to thank the following for their support:

On 27 March 2023, CLLAN (CLL Advocates Network) collaborated in the joint initiative with ALAN (Acute Leukemia Advocates Network), CMLAN (CML Advocates Network) and UK charity organisation Leukaemia Care, and hosted second webinar in the series of four.

This webinar brought together international patients with CLL, patient advocates and stakeholders from different countries around the globe. The aim of this educational webinar was to give patients and advocates an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international haematology conferences EHA22 and ASH22. What is new and what does this mean for patients?

We were joined by:

Moderator:
Nick York – CLL Patient, Patient Advocacy Healthcare Liaison Officer, Leukaemia Care (UK)

Speakers:
Prof Paolo Ghia – Consultant Hematologist, Professor of Medical Oncology Università Vita-Salute San Raffaele Milano, (IT)
Dr Brian Koffman – Patient Advocate, CLL Advocates Network (US)

Webinar recording:

A big thank you to all patient and advocates who were able to attend live, and to our panellists for their excellent presentation, insight and for sharing their wealth of experience.

Acknowledgement

We would like to thank the following for their support:

On 21 March 2023, CLLAN (CLL Advocates Network) collaborated in the joint initiative with ALAN (Acute Leukemia Advocates Network), CMLAN (CML Advocates Network) and UK charity organisation Leukaemia Care, and hosted the first webinar in the series of four.

This webinar brought together international patients with AML, patient advocates and stakeholders from different countries around the globe. The aim of this educational webinar was to give patients and advocates an overview of how AML is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international haematology conferences EHA22 and ASH22. What is new and what does this mean for patients?

We were joined by:

Moderator:
Charlotte Martin – Patient Advocacy Manager, Leukaemia Care (UK)

Speakers:
Dr Mike Dennis – Consultant Hematologist, The Christie NHS Foundation Trust (UK)
Anne -Pierre Pickaert – Patient Advocate, Acute Leukemia Advocates Network (FR)

Webinar recording:

A big thank you to all patient and advocates who were able to attend live, and to our panellists for their excellent presentation, insight and for sharing their wealth of experience.

Acknowledgement

We would like to thank the following for their support:

We are proud to welcome a new member to our network! Please join us in welcoming our first member from Mexico “Asociación Mexicana de Lucha Contra el Cáncer” / “Mexican Association for the Fight Against Cancer” (AMLCC) to this big family!

Founded in 1972, the nationalwide organisation “Asociación Mexicana de Lucha Contra el Cáncer” / “Mexican Association for the Fight Against Cancer” (AMLCC) is committed to help cancer patients in Mexico while specifically focusing on the most vulnerable sectors of society.

Their vision is to be the leading organisation in the fight against cancer that works in an allied way, to avoid preventable cancer deaths.

To learn more about Asociacion Mexicana de Lucha Contra el Cancer, please visit their profile in our members section.

The CLL Advocates Network now counts 48 members from 39 countries!

Click here to see our full list of members.

We wish everybody lovely Christmas and a successful start of a happy and healthy 2023.

Please find our Christmas greetings here:

On World CLL Day 2022 the CLL community released a full set of inspiring videos that share patients’, carers’ and clinicians’ experience of the challenges a CLL diagnosis can bring and what it is like to live and navigate in this latest phase of the pandemic. We will be featuring these videos on clladvocates.net (see news section) by publishing one video every week until the end of December.  

CLL patient Brian form USA shares what it is like to live with a diagnosis of chronic lymphocytic leukemia (CLL) and how the COVID-19 pandemic and the lifting of public health measures has affected him. He explains how you can help CLL and other immunocompromised patients to get on board and navigate this new landscape.

Watch Brian’s video here:

We would like to express our gratitude to all participants for sharing their voice in rising awareness about chronic lymphocytic leukemia (CLL) and the impact of COVID-19 on the immunocompromised patients. As COVID-19 restrictions are lifted and life returns to normal for those with healthy immune systems, the CLL patients may remain at risk.

Please help the immunocompromised to get on board with the rest of society. Continue spreading the message of awareness!

Thank you!