HULL PRENOSI NEWSLETTER LYMPHOMA COALITIONA (LC) ZA MJESEC RUJAN 2021. GODINE

 

 
 

A MESSAGE FROM LORNA
LATEST NEWS & RESEARCH

COALITION COMMUNITY
TOP ACADEMIC ARTICLES

 A Message from Lorna: 

There is much going on right now that requires your attention

While these are important items, I want to take time here to recognise someone important.
 

Anita Waldmann, one of the founding members of the Lymphoma Coalition  and an instrumental person  in its growth, also fully dedicated to the organisation she founded in Germany Leukämiehilfe RheinMain (LHRM) as well as many other initiatives in Europe and globally, is retiring from her advocacy role after more than 30 years of service and devotion.

                                           

 
 

Anita’s life as an advocate began after her much-loved son Oliver very sadly succumbed to leukaemia in 1992. Taking one’s grief and channeling it into making the situation better for others who face similar circumstances takes a very special person.  She learned as she went, building organisations and using her voice to ensure patient needs were prioritised and that they had access to the treatments and support they needed. She became not only a champion of patients, but also a supporter of every other advocate she met.  I am sure we all have stories of how Anita has shared her wisdom with us over the years, gently guiding us, connecting us to people who could help us meet our objectives, encouraging us in our own work.

Anita was affectionately crowned Mama Lymphoma at the 2015 Global Summit for all her efforts on behalf of patients. Her award was engraved with the words “The world is a better place because of all you have done”, a sentiment deserved and true to this day.

                                       

We will miss her in our midst, but we wish Anita and her husband Thomas a wonderful retirement full of joyful times with friends and family.
 

Coalition Community

Global Summit is 4-7 October
Registration is now open for the Lymphoma Coalition Virtual Global Summit, happening 4-7 October! The theme for this year’s Summit is Innovation, Speed and Flexibility, traits that will make us all more successful moving  forward- Register for the Virtual Global Summit Here

LC is pleased to announce that noted envelope expert, Prof. Dr. AMR (Fons) Trompenaars , will be the keynote speaker.

Fons wants input from you to ensure the talk best meets our needs as patient organisations. Please complete the information requested here to let him know your thoughts. You will need to create a log in on this page in order to fill out the requested information.

All Global Summit participants will also get free access for one year to the Culture for Business App.
 

Featured Speakers:

Stefan Gijssels will help frame for us what Patient Pathway Leadership could look like.
Cheryl Field will walk us through examples of How Innovations in Digital Health Impact Advocacy and Care Outcomes.
Ann Single will provide tips for HTA in a Covid Dominated World.
Philipp von Gallwitz will speak about the Value of Partnerships.

We look forward to learning together 4-7 October! You don’t want to miss this!
                                                                                                                                
World Lymphoma Awareness Day 2021
September is recognised as Lymphoma Awareness Month for some Members and Blood Cancer Awareness Month for others that support patients with multiple cancer types. Either way it is a time for advocates, supporters, and patient organisations to raise awareness and bring attention to the key issues affecting our community. It has been a great month, seeing everyone rally together to raise awareness and support! 

A huge thank you and congratulations to everyone one who participated in World Lymphoma Awareness Day 2021. We are completely thrilled with the response and support from Members, healthcare professionals, partners and other stakeholders and know the issues raised were seen and heard by many.
 
The We Can’t Wait messaging resonated with lymphoma organisations around the world. We saw more participation and sharing of the campaign materials than in years past. This is not only exciting in terms of the campaign’s success, but it speaks to the importance and urgency of the message itself. The pandemic has affected the lymphoma community greatly, and we must continue to raise awareness for these issues and drive change that ensures faster diagnoses, resumes pre-pandemic levels of care and treatment and safeguards support for patient organisations.

Please complete this short survey to help us evaluate the campaign and plan next steps as well. 

New Members:
We are so excited to have two new members join the Coalition: CLL Canada and The Dutch Cutaneous Lymphoma Foundation (Stichting Huidlymfoom)! Together we are enabling global impact by fostering a lymphoma ecosystem that ensures local change and evidence-based action.

 
CLL CANADA
The mission of CLL Canada is to advocate and provide education to improve access to health care that will extend the lives of Canadians affected by CLL and SLL. They are an all-volunteer organization of patients with CLL and caregivers. Their advocacy activities include submissions to regulatory authorities in support of new, effective CLL treatments, as well as communicating the patient perspective to health care stakeholders.

CLL Canada keeps their membership up-to-date  through regular newsletters on new developments and useful resources as well as, during the pandemic, on what they need to know about COVID and vaccination.

For further information visit: https://cllcanada.org/

The Dutch Cutaneous Lymphoma Foundation (Stichting Huidlymfoom)
The Dutch Cutaneous Lymphoma Foundation (Stichting Huidlymfoom) is an independent volunteer-run foundation with the aim of informing and representing the interests of patients with a cutaneous lymphoma, by means of sharing knowledge and achieving optimal quality of treatment. In addition, the foundation also provides contacts with fellow patients, for example by organising contact days.

For further information contact info@stichtinghuidlymfoom.nl or see www.stichtinghuidlymfoom.nl 

 

Latest News & Research

Latest News

NORD's 3rd Annual Rare Cancer Day September 30
All subtypes of lymphoma are also considered rare cancers due to their low incidence rates. Rare Cancer Day is on 30 September. A day devoted to shining a light on rare cancers and the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis. To learn more, visit: Rare Cancer Day – NORD (National Organization for Rare Disorders) (rarediseases.org)

Big Data For Blood Cancer Awareness Day September 30
The HARMONY Alliance is launching the 1st World Big Data for Blood Cancer Awareness Day on 30 September 2021. HARMONY researchers and clinicians are using Big Data to develop more personalised treatments for blood cancer patients. This event is open to patients and is an open forum for the questions you have about Big Data projects in haematology.

If you would like to have your questions answered during this session, send an email to: communications@harmony-alliance.eu – including your name, country, the topic of your interest, possible question and why you would like to participate. They will confirm by email and include the Forum Zoom link with password.

To learn more about #bigdataforbloodcancer CLICK HERE

LC Research

In the past month we were able to share LC research findings at two top conferences.

International Workshop on Chronic Lymphocytic Leukaemia (iwCLL)
17-20 September 2021

The iwCLL meeting provides a forum for exchanging information and encouraging collaboration among international leaders and scientists interested in CLL and lymphoproliferative disorders.

LC's abstract at iwCLL examined how knowledge of genetic and biomarkers affect the information and communication experiences of patients with CLL. You can read there full abstract HERE.

Lymphoma Coalition's CEO, Lorna Warwick, joined a panel discussion on the patient experience alongside fellow patient advocates: Deborah Sims from Australia who shared her experience as a patient, Brian Koffman, Chief Medical Officer and Founder of CLL Society, and Zack Pemberton-Whiteley, CEO of Leukaemia Care. The panel highlighted observations and results of patient advocacy led experience surveys, showing how physicians, charities and patients can work together to improve the patient experience and improve outcomes.  The panel was facilitated by Prof John Seymour from Australia, a member of LC’s Medical Advisory Board. 
 
Information on key learnings form iwCLL will be coming soon.

              

European Society for Medical Oncology (ESMO) Congress:
16-21 September 2021

The 2021 ESMO meeting was an opportunity to connect professionals with diverse expertise to experience an integrated multi-professional approach to cancer care, from a medical oncology perspective

LC's abstract described the barriers to treatment for patients with lymphoma across Europe: Upper middle income versus high income countries. The results show that patients with lymphoma differ in how they experience ‘barriers to care’ across country income classification in Europe. Lymphoma Coalition advocates that more effort should be put into ensuring equitable access to lymphoma care across European countries. You can read there full abstract HERE.

Thank you to everyone for participating in the Global Patient Survey 2020. These abstracts are one of the ways this data was used. The 2022 survey will launch in January. 

All of LC's research is available here.

September's Top Academic Articles

Treatment News
Lymphoma Hub Satellite Symposium at ICML 2021: Summary and roundtable discussion on the sequencing of therapies in high-risk relapsed/refractory lymphoma and chronic lymphocytic leukemia (CLL). https://lymphomahub.com/medical-information/lymphoma-hub-satellite-symposium-2021-summary-and-roundtable-discussion

Prognostic impact of six versus eight cycles of standard regimen in patients with diffuse large B-cell lymphoma
https://www.esmoopen.com/article/S2059-7029(21)00171-X/fulltext

Comparison of best supportive care, CHOP, or R-CHOP for treatment of diffuse large B-cell lymphoma in Malawi
https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(21)00261-8/fulltext

Early relapse in first-line follicular lymphoma: A review of the clinical implications and available mitigation and management strategies
https://link.springer.com/article/10.1007/s40487-021-00161-5

ASTCT, CIBMTR, and EBMT clinical practice recommendations for transplant and cellular therapies in mantle cell lymphoma
https://www.nature.com/articles/s41409-021-01288-9

Predicted risks of cardiovascular disease following chemotherapy and radiotherapy in the UK NCRI RAPID trial of positron emission tomography–directed therapy for early-stage Hodgkin lymphoma
https://ascopubs.org/doi/full/10.1200/JCO.21.00408

Efficacy and safety of CAR-T cell products Axicabtagene Ciloleucel, Tisagenlecleucel, and Lisocabtagene Maraleucel for the treatment of hematologic malignancies: A systematic review and meta-analysis
https://www.frontiersin.org/articles/10.3389/fonc.2021.698607/full

Research News
Identification of key mutations in central nervous diffuse large B-cell lymphoma (DLBCL) by comprehensive analysis between sequencing and TCGA database
https://tcr.amegroups.com/article/view/53287/html

Progress in molecular feature of smoldering mantle cell lymphoma
https://ehoonline.biomedcentral.com/articles/10.1186/s40164-021-00232-3

Benzene exposure and non-Hodgkin lymphoma: a systematic review and meta-analysis of human studies
https://www.thelancet.com/journals/lanplh/article/PIIS2542-5196(21)00149-2/fulltext

Lymphoma patients show continued cognitive decline after chemotherapy
 https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/lymphoma-chemotherapy-cognitive-decline-patients-treatment-risk/

Impact of COVID
Management of chronic lymphocytic leukemia in Italy during a one year of the COVID-19 pandemic and at the start of the vaccination program. A Campus CLL report report https://onlinelibrary.wiley.com/doi/10.1002/hon.2899
 

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