Author: Admin Coordination

From 08-11 June 2023, the EHA Hybrid Congress took place for the 28th time. Frankfurt / Germany was chosen as the city to host this year´s congress. CLLAN was present with a total of 8 representatives (6 Steering Commitee members + its 2 staff members).

EHA is known as the premier hematology congress in Europe and offers a congress program covering every sub-specialty in hematology and the opportunity to network with experts from all over the globe. The educational and scientific program highlighted state-of-the art clinical practice, the latest findings, and innovations in hematology research. Here are some key takeaways in the area of CLL:

• CLL12 long-term results confirm that Active Monitoring (“Watch & Wait”) continues being the right strategy
• Clinical trials confirm efficacy of non-covalent BTK inhibitors in those patients that are resistant to covalent BTK inhibitors
• There are new drugs in the pipeline such as BTK degraders and bi-specific antibodies
• Clinical trial with CAR-T plus Ibrutinib confirms efficacy and long-term remissions
• Overall this year’s EHA was a continuation of developments and trials. It confirmed that existing treatments work and that new ones are on the horizon.

The congress also provided participants with the opportunity to attend satellite programs, Updates-in-Hematology and to visit the exhibition area where the patient advocacy community again had a joined booth at the (“Advocacy Hub”). Furthermore, EHA traditionally provides a good opportunity to meet our friends and patient advocacy colleagues as well as our esteemed industry partners. Thanks to all for taking the time to connect with us in Frankfurt despite everybody´s busy schedule!

Worth mentioning as well that CLLAN had submitted an abstract to EHA titled “Identifying inequities in support – Global Survey of Patient Organisations delivering support services for CLL Patients” that was published in the online Abstract Book (see under CLL CLINICAL), a supplement of HemaSphere (EHA’s official journal), the EHA Library and the Congress platform. Our friends from Acute Leukemia Advocates Network (ALAN) presented a poster (P1688) on the Leukaemia Patient and Carer Experience Survey, a project done jointly with CLLAN and CML Advocates Network (CMLAN).

Thanks to our vice-chair, Pierre Aumont, CLLAN was also again represented at the EHA Patient Advocacy Committee (PAC), a committee that – among other tasks – is in charge of co-organizing the EHA-Patient Joint Symposium which this year tackled the topics of drugs evaluation and reimbursement criteria. The EHA-PAC meeting offered a good opportunity to engage with the President, Past President and President Elect on what more can be done to include the patient voice across EHA. EHA-PAC members are involved in important committees such as the Scientific Committee and the European Affairs Committee. All of the above proves how much EHA values the patient voice and of how over the past years it has more and more turned into a truly patient-friendly association, a fact that is highly appreciated not only by CLLAN but by the wider patient advocacy community.

Last but not least, after years of virtual collaboration, the attending members of the CLLAN Steering Committee and two team members were finally able to meet in person. The much-anticipated CLLAN Team meeting provided an opportunity for attendees to engage face-to-face and delve into important discussions regarding the network’s future plans. This opportunity breathed new life into the network’s endeavours. With enthusiastic discussions on “hot topics” and strategic planning for the future, the CLLAN Team meeting reinforced the unwavering commitment of its members to improving the lives of CLL patients worldwide. Through their collective efforts, the network will continue to champion the cause of CLL advocacy, ensuring that no patient faces the challenges of CLL alone.

THE FULL CONFERENCE REPORT IS STILL UNDER DEVELOPMENT. Please look out for our next newsletter, updates on www.clladvocates.net and information shared on our Social Media channels!

We are proud to welcome a new member to our network! Please join us in welcoming Leukämiehilfe München e.V., our fourth member from Germany!

Leukämiehilfe München e.V. was founded by patients, relatives, nurses and doctors in order to improve the inpatient and outpatient situation for patients and their relatives.

They wanted to fill a gap in personal and psychotherapeutic support. In addition to patient visits and meetings between patients and relatives, they now support various other projects such as music therapy and yoga on haemato-oncological wards in hospitals.

To learn more about Leukämiehilfe München e.V., please visit their profile in our members section.

The CLL Advocates Network now counts 52 members from 42 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 Maxi-Vida, our first member from Chile!

Maxi-Vida, an esteemed organisation, brings together a collective of patients and caregivers who confront various forms of leukemia (CLL, CML, AML, and ALL) and gastrointestinal stromal tumor (GIST). With a primary objective of providing comprehensive support, Maxi-Vida strives to enhance the lives of patients and caregivers, empowering them to navigate their healthcare journey with confidence and achieve an improved quality of life.

To learn more about Maxi-Vida, please visit their profile in our members section.

The CLL Advocates Network now counts 51 members from 42 countries!

Click here to see our full list of members.

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: