One week to #WLD !

-1 week to #WLD22

Listen to Lidija Pecova who is sharing her thoughts on why it is important to raise awareness of leukemia !

It’s time to get involved!
🔴Download our social media toolkit:
🔴 Share our posts on your social media pages
🔴 Tag our accounts and use the hashtag #BeLeukemiaAware

Our members are also getting ready ! 

Campaigning for Cancer (South Africa) have released two new infographics, one directed to general public and disclosing the signs and symptoms of leukemia, while the second one is directed to persons who have recently been diagnosed with leukemia.



Also a press released have been issued.

HULL (Croatia) have released their brochure on acute leukemia dedicated to patients and their families.

Acute Leukemia Brochure

Asopaleu (Guatemala) is organizing an virtual event on saturday 3rd September with leukemia experts. They will also deliver kits to patients in hospitals and also some “thank you” gifts to doctors.

Blood Cancer Society Nepal (Nepal) is organizing an awareness programme at hospital with doctors, nurses and patients.

Association AMAL (Morocco) translated some materials into arabic and created a roll up banner and some materials to be distributed.

Upcoming webinar: Treating adolescents and young adults with acute leukemia

CCI and ALAN will held a free webinar on “Treating adolescents and young adults with acute leukemia”.

Presented by 

Dr. Andishe Attarbaschi, Pediatric Oncologist


27th October 2022, 1pm CET.

Registration link

After registering, you will receive a link to be able to connect.

See you on 27th October 2022 !

Acute Leukemia Global Summit

We are looking forward to our third Acute Leukemia Global Summit on 14th October 2022, 3-6 pm CET. This year again, we have decided to hold it as virtual.


15.00 – 15.15 Welcome

15.15 – 16.15 Update on quality of life (QoL) in acute leukemia

  • Medical: improved survivorship in acute leukemia (how it has changed with the new treatments compared to before) – Speaker: Dr Abhishek Mangaonkar (Mayo Clinic)
  • Evidence based advocacy: results from QoL survey, importance of shared decision making, incorporating QoL preferences in discussion on treatment options – Speaker: Zack Pemberton-Whiteley
  • Q&A

16.15 – 16.30 Break

16.30 – 17.45 What can we do as advocates ? 

  • Evidence based advocacy: running survey, advocate for PROs in studies – Speaker – Ananda Plate
  • Understand patient preferences – Speakers : David Mott & Chris Skedgel – OHE
  • Q&A

17.45 – 18. 00 Wrap up and Close


Register in advance for this meeting:

After registering, you will receive a confirmation email containing information about joining the meeting.

Contact Information

In case of questions, you can contact Samantha Nier, and/or by phone /What’sapp/Telegram +41 79 943 26 81

Q3 2022: Additional information and data in acute leukemia


The combination of the IDH1 inhibitor ivosidenib and azacitidine demonstrated significant clinical benefit in patients with newly diagnosed IDH1-mutated AML, according to phase III results published in The New England Journal of MedicineWith a median follow-up of just more than one year, the median event-free survival (EFS) was significantly longer for patients treated with ivosidenib plus azacitidine compared with those treated with azacitidine plus placebo (hazard ratio for treatment failure, relapse from remission, or death = 0.33; 95% CI 0.16-0.69; p=0.002). (Ref. Montesinos P, Recher C, Vives S, et al. Ivosidenib and azacitidine in IDH1-mutated acute myeloid leukemiaN Engl J Med. 2022;386:1519-1531.)


Combination treatment with the tyrosine kinase inhibitor nilotinib and anti–PD-L1 dramatically improves long-term survival of leukemic mice. Depletion of CD4+ T cells prior to therapy completely abrogates the survival benefit, implicating CD4+ T cells as key drivers of the protective anti-leukemia immune response. Indeed, treatment with anti–PD-L1 leads to clonal expansion of leukemia-specific CD4+ T cells with the aforementioned helper/cytotoxic phenotype as well as reduced expression of exhaustion markers. These findings support efforts to use PD1/PD-L1 checkpoint blockade in clinical trials and highlight the importance of CD4+ T-cell dysfunction in limiting the endogenous anti-leukemia response. (Ref:

More from EHA

Leukaemia Care (UK) are holding their annual conference /  community gathering on Saturday 13th August 2022, as an hybrid event. They have offered that those who are interested can join virtually, especially the EHA updates and disease specific breakout sessions (see in red below). Note that you are very welcome to attend the whole event.

The program is as follows (times are shown UK time):

10:10am – 10:30am  The future we will create together

10:30am – 11:00am  Make a difference; get involved with Leukaemia Care

11:15am – 11:45am  “Keep me alive long enough until I die of something else.” – How you can help us get more treatments approved on the NHS, key speaker – Nick York, CLL patient

11.15am- 12.30pm What’s New ? 

What’s new in CML? –  Dr. Joanne Ewing, Consultant Hematologist, University Hospitals Birmingham NHS Foundation Trust (Breakout room 1)

What’s new in AML/MDS? – Dr. Manoj Raghavan, Dr Manoj Raghavan, Clinical Senior Lecturer and Honorary Consultant Hematologist, University Hospitals Birmingham NHS Foundation Trust (Breakout room 2)

11:45am – 12:30pm  “To those who are considering fundraising – just do it” – Fundraising in the Community

1:30pm – 2:05pm  “Who would insure someone with leukemia to go to the North Pole?” – Challenging myself (and perceptions of leukemia) for Leukaemia Care

1.30pm – 2.45pm What’s new ? 

What’s new in CLL? – Dr. Shankara Paneesha, Consultant Hematologist, University Hospitals Birmingham NHS Foundation Trust (Breakout room 1)

What’s new in MPNs?  – Dr. Joanne Ewing, Consultant Hematologist, University Hospitals Birmingham NHS Foundation Trust (Breakout room 2)

2:05pm – 2:45pm  “We will not just be buddies, but good friends too.” – Connect, befriend and support: what is the Buddy Scheme?

2:45pm – 3pm Volunteer awards and prize giving

3pm – 3:10pm Summary and close


Here is the link to register:

Note: you have to register for the whole event and during the registration process, you’ll have to indicate the leukemia type(s) you are interested in. If you wish to attend only the breakout(s), simply join at the time of the session. 

Do not hesitate to let us know if you have questions. Enjoy the summer ! 

Q2 2022 Newsletter

We have just sent out our second newsletter of 2022. And in case you have missed it, you can still find it here!

In this edition, we run you through the efforts for the upcoming World Leukemia Day, touch base and feedback on the EHA conference in Vienna, whilst chatting with acute leukemia patient, Lisa, who is currently awaiting a stem cell transplant.

Read the newsletter: ALAN_Newsletter_Vol.2

Enjoy the reading ! 

And please do not hesitate to let Rian and Samantha if you have any questions, comments, feedback ! We would be more than happy to hear from you !

2 months to #WLD22

We are two months away from World Leukemia Day 2022 #WLD22.

Toolkit, messages, campaign –>

Materials :

Hashtags : #BeLeukemiaAware #WLD22 #WorldLeukemiaDay #Leukemia #PatientAdvocacy

Feel free to contact us to discuss how you can be involved !

And while waiting for the 4th of september, listen to Mirjana Babamova talking about the importance of bringing the community together for World Leukemia Day

Webinar: CAR-T cell therapies and what it means for patients

ALAN and Lymphoma Coalition hosted a free webinar on CAR-T cell therapies and what it means for patients.

In this webinar we spoke about:
– What are CAR-T cell therapies ?
– What does it mean for patient ?
– Experience from patients

About the speakers:

  • Lorna Warwick, CEO of Lymphoma Coalition

Lorna was appointed CEO of the Lymphoma Coalition in December 2018, to provide vision and leadership for the over 80-member strong organisation, having previous been the Coalition’s Director of Strategic Communications and Engagement. Lorna has successfully held senior leadership roles in health charities for more than twenty years and has a diverse background in patient advocacy, mission development, communications, and strategic planning.

Her efforts have been focused on haematological cancers since 2003, at a national (Canada) and global level. Lorna is recognized and respected for strong leadership skills, breadth of knowledge, critical thinking, and patient-focus.

The rich data procured from the biennial Lymphoma Coalition Global Patient Survey on Lymphomas and CLL allows Lorna to truly understand and report on the global patient experience, by subtype, by therapy area, by geographic area, by gender and by age. As a result of her years of experience in evidence-based advocacy and especially in the haematology field, she is frequently asked to present on patient experience, emerging trends and important issues in the lymphoma and CLL landscape.

  • Cerys Thompson, Lymphoma patient

In October 2020, at the age of 29, Cerys was diagnosed with Non-Hodgkin’s Lymphoma – Diffuse Large B-Cell Lymphoma (DLBCL). Cerys went on to have chemotherapy and then CAR-T which she captured in her blog,  A Little Bit of Cancer, to share her experiences with others and demystify the “cancer journey”

  • Sophie Weldon, Acute Leukemia patient

Sophie was diagnosed at 20 years old with ALL whilst she was in the middle of completing my degree. She have been in remission for nearly 3 years now, and started working for Leukaemia Care earlier this year.


Slides presented:

Patient experience

Highlights from EHA

From 9th to 17st June, the Acute Leukemia Advocates Network (ALAN) attended the 27th European Hematology Association (EHA) congress, held for the hybrid, with a F2F part from 9th to 12th June and a virtual part from 15th to 17th June. We had the chance to be in Vienna for the F2F component as well as attending online when we came back.

Here is what we took away from the various sessions. The report was written by Rian.

Focus on AML

Novel treatment options and prognostic markers in AML

Hernandez-Sanchez, confirmed his finding on the NPM1 Mutated AML and its impact on patients, admitting it was linked to a higher chance of relapse and/or loss of life, although found to only effect a lower percentage of overall AML patients, whilst admitting more work would need to be done in these fields to conclude further the NPM1 mutation and its behaviours. 

Following from this session Kuojui Sun, presented their findings on ST mutations. Confirming the ST mutation of de novo AML was present in 32.8% of patients, arguably though, this was more common in older patients (45%) in comparison to younger patients (24%). The mutation had an association with a lower white blood cell and blast count. The mutation is associated with a lower overall survival rate in most cases. It is suggesting that a Allo-HSCT could improve the outcome for older patients with the ST mutation. 

Ruihao Huang, confirmed the promising discovery and continued research into CAR NK cell therapy, confirming its positive tolerability for relapsed and refactory AML patients, with positive anti-tumour efficacy aswell. It is also suggested an Allo-HCST could be a beneficial and promising consolidation treatment for this also. 

Precision medicine in AML 

Over the last 12 months there has been extensive research into the protocols around the current treatments for AML. The consensus is that a majority would like to seek more effective treatment options. 

Harmut Dohner has admitted that there have been major advances in our knowledge of AML this year. Which is allowing us to update classification protocols and treatments. 

A revised criteria is appearing from the European Leukemia Network (ELN) and it is expected more work and discovery is hopeful within these treatments to allow for further development of treatment. The speakers continued to discuss the likelihood of some new treatments and the hope that these treatments may give to those affected by AML in the future. It is a promising time for many, hope is the key word we took from these talks. Hope of further discoveries to compliment the current options and knowledge available.

Novel insights into AML treatments

Much research is being done into the improvement of life expectancy for those affected by AML. It is no secret that AML still holds a disappointing survival and relapse rate. 

In new research a trial was conducted to test the other treatment plans in conjunction with the novel 3+7. Decitabine was found to be more or less similar in its results with the current 3+7 plan. Although it was found to have slightly more effective results with those over the age of 70 years.

Much work is being carried out to support the change of treatment protocols. Many are giving similar results with slights of hope dazzled into them. Below is a clinical trial result that was presented by Nigel Russell at EHA. 

AML in elderly patients 

It is clear from the findings that are more commonly emerging these days that understanding and knowledge of the biology of the disease is increasing massively. We are aware that the elderly are struggling more, and now understanding that this is because age leads to other biologies within the genes that has led to epigenomes. However, whilst boosting research we have found one major change help this research the most, and that is uniting within Europe has helped us understand the changes in the disease and identify the changes in outcomes and what impacts that.

We want to now move and focus on the micro factors of AML to help us cure AML in elder patients. This appears to be a clear focus for many at this time in research and development.

CD123-CD33 Compound Car-T Cells with novel antigen binding domains provide a new hope for the treatment of AML. 

Work has been researched into in a hope of attempting to improve the outcome of relapsed and refectory AML via Car-T therapy. AML has a notoriously bad reputation for its 5-year non-relapse/ survival rate. The AML antigens that were found most affected by this form of treatment (CD123 & CD33) are present in around 95% of AML patients. Testing therapies have almost doubled the survival rates in preclinical trials.

Antifungal prophylaxis

Patients with AML belong to the highest risk group for developing invasive fungal disease (IFD) at diagnosis or during treatment course. Relevant entities of IFD in this population include invasive candidiasis and candidemia mostly acquired through fungal translocation of commensal yeasts from the lumen of the gastrointestinal tract via the mucosal barrier, whereas invasive mold infections are acquired through airborne inhalation of fungal conidia, airway germination, and subsequent dissemination. These entities affect profoundly neutropenic patients.

To address those questions, EHA gathered an expert group in 2019 to give recommendations for clinical management in cooperation with the Cochrane Haematology Group. For the resulting guideline, studies including all relevant novel-targeted agents and antifungal agents were reviewed, summarized and—depending on available studies—evidence-based or consensus-based recommendations were phrased.

Summary of Recommendations Regarding Antifungal Prophylaxis for Clinically Relevant Antileukemic Drugs can be found here: summary of recommendations

Focus on ALL

Novel Treatment Insights into ALL

Peihua Lu presented a novel and successful CD7 gene knockout CAR-T therapy, with particular focus for relapsed or refractory T-Cell hematologic malignancies. This is known for having a higher level of relapse. It demonstrated a success in KO7CAR-T therapy having a high efficacy for CD7+ T-cell malignancies, I feel the most positive news from this would be the success it had in those who had relapsed even post transplant, something that can be a great fear for many patients. It was confirmed, however, that when CD7 was lost in relapse, patients often had a poorer outcome. 

Following on from this Nicholas Short extended the results found in a research trial that was conducted to discuss and research the use of Ponatinib and Blinatumomab for patients with Philadelphia chromosome positive acute lymphoblastic leukaemia. These were updated results from a second phase study. Concluding it’s safety and efficacy. Most interestingly they only transplanted one of the patients from within the trial and no patients had since relapsed. This shows more hope on the future of treatment. 

MRD use in adult ALL 

This interesting talk showed and took us through the reality and current use and understanding of MRD in Adult ALL cases: 

  • MRD’s main use currently is the positional use of post consolidation therapies.
  • Use of immunology therapies in MRD positive and B-cell positive cases is likely to decrease chances of relapse and be a positive force for overall survival in these cases. 
  • Ph positive ALL targeted and immune therapy has shown clear decreases on the MRD levels.


Quality of life and health economics in hematological patients

We were so happy to see the support and talk being raised for those who are not able to be put forward for transplant. It is important we are able to offer options to all and Mattia D’Agostino concluded this with the below.


During the acute leukemia day, we uncovered the hope for many new treatments and ideas around acute leukemia and the hope to improve the likelihood of non-relapse and also the mortality for the diseases around it. 

It became apparent that CAR-T cell therapy was becoming quite favourable within the industry. Particularly for those who are in the higher risks. Though it was heavily reminded that this is not a ‘cure all’ it is merely more hope when accompanied by other treatments also. 

Immuno-therapy has become a very popular choice of research around combination of immunotherapy and chemotherapy to help reduce the risk of relapse in some forms of acute leukemia. It will be an interesting future, and only research will give us answers to what we ask, but we as I am sure many others, have come away from the EHA conference with hope and intrigue. 

We do have more to share so if you feel you need more, please let us know at and

Additional resources to check

Recommendations for the top abstracts to look out for in AML. See post here:

Recommendations for the top abstracts to look out for in ALL. See post here:

International COVID-19 Blood Cancer Coalition (ICBCC)

A multi-stakeholder coalition consisting of representatives from the global patient advocacy and clinical community has formed the International COVID-19 Blood Cancer Coalition (ICBCC) to address the specific impact of the pandemic on immunocompromised blood cancer patients (both acute and chronic), like those living with acute leukemia and to recommend solutions and actions to mitigate those risks. 

The coalition calls on researchers and policy makers to make vaccines available to everyone, prioritize research and equitable access to testing and protective antibody treatments to the vulnerable, and maintaining masking and social distancing in high-risk circumstances. 

Our colleagues from CLL Advocates Network (CLLAN) are leading the secretariat on behalf of the coalition.

The coalition has prepared a Joint Patient Impact Statement for use in different countries to aid when advocating for the provision of anti-COVID-19 treatment and care for immunocompromised or immunosuppressed (IC/IS) blood cancer patients.

The Statement has by now been endorsed by 73 networks and national organisations of the global patient advocacy community as well as 16 renowned medical societies and representatives from the global clinical community.

List of endorsers: Endorsers

Also, ICBCC´s global campaign toolkit is available for download to help raise awareness of the vulnerability and needs of the immunocompromised blood cancer community around COVID-19 prevention and treatment. The toolkit consists of:

Campaign materials:

It would be great if you shared the campaign’s social media posts using #ICBCC and #considerthecompromised

For more information on the coalition, visit ICBCC website :