DONOSIMO BILTEN LYMPHOMA COALITION-A ZA MJESEC SVIBANJ 2023.

U nastavku možete pročitati bilten CLLAN-a, međunarodne organizacije koja okuplja oboljele od kronične limfocitne leukemije (KLLL), kao i udruge zagovornika oboljelih od te hematoonkološke bolesti.

Dražen Vincek

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CLL Matters

CLL Advocates Network Newsletter

 

Launching White Paper on CLL
immune-related challenges

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/

 

EHA 2023
CLLAN/AstraZeneca Patient Advocacy Exchange – Compromised: Uncovering the immune-related challenges facing people with Chronic Lymphocytic Leukaemia 


Hybrid Patient Advocacy Exchange
Dinner will be provided
 

We are inviting you to participate in a European Haematology Association (EHA) Satellite Patient Advocacy Exchange held on:

Saturday 10th June 2023
19:30-21:45 CET,
at NHOW Hotel Frankfurt, Meeting Room – Rupee & Lira

and virtually accessible via Zoom.

The meeting is aimed at Patient Advocacy Group (PAG) representatives and the wider clinical community with a multidisciplinary setting in order to uncover the immune-related challenges facing people with chronic lymphocytic leukaemia and the mental health journey experienced by patients. This non-promotional meeting is organised and funded by AstraZeneca, in partnership with the CLL Advocates Network, and will bring together patient advocates, representatives of Blood Cancer PAGs and Patient and Clinical communities across the globe, with the aim of highlighting the immune challenges faced by CLL patients and sharing information on how patient advocacy can support improvements in care and empower patients. It will be a great opportunity to foster connections between CLL PAGs and the clinical communities globally.

As part of this discussion, we would also like to provide an opportunity for knowledge exchange between PAGs focusing on CLL and PAGs focusing on other blood cancers and the wider clinical communities. This will allow us to gain insights into how the unmet needs of blood cancer patients can be brought to life in different communities.

We are keen to understand your interest in attending this hybrid event. If you are interested in participating, please register by the appropriate link below:

For any patient groups attending in-person here

For patient groups attending virtually here

For the clinical community/external experts attending in person here

Following registration, you will then receive confirmation of your attendance.

We look forward to hearing from you.

Nick York
CLL Advocates Network Steering Committee Chair

Yasmine Hassan
Director, Global Patient Affairs, Oncology
AstraZeneca

 

Join us at the EHA2023 Hybrid Congress! 

EHA 2023 is just around the corner. From 8-11 June 2023 the hematology community is meeting in Frankfurt / Germany, with the possibility of virtual participation given the hybrid nature of the event. CLLAN will be strongly represented with 6 CLLAN Steering Committee members and staff members being on site to attend this one-of-a-kind event.

The European Hematology Association (EHA) promotes excellence in patient care, research, and education in hematology. They serve medical professionals, researchers, and scientists with an active interest in hematology. They are proud to be the largest European-based organization connecting hematologists worldwide to support career development and research, harmonize hematology education, and advocate for hematologists and hematology.

The EHA2023 Hybrid Congress offers an interactive, comprehensive program dedicated to clinical research and practice, basic and translational research, as well as important opportunities for collaboration with stakeholders in the field of hematology. The educational and scientific program will highlight state-of-the-art clinical practice, the latest findings in hematology research, and recent approaches on the diagnosis and treatment of hematologic diseases.

Visit us at the Patient Advocacy Hub, the joint booth of patient organisations in the exhibition hall. Also please don´t miss our Hybrid Global Patient Advocacy Exchange event on Saturday 10 June 19:30-21:45 CET at the NHOW Hotel Frankfurt. Dinner will be provided. This event will be held in a hybrid format, allowing you to attend virtually if preferred. For details, please refer to the article above.

We look forward to seeing many familiar and new faces in Frankfurt!

 

We are proudly welcoming two new members: CLLAN now counts 50 members from 41 countries!

 

Slovenian lymphoma and leukemia patient association, L&L (Slovenia)


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.


ASOPALEU (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.
 
 

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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