ASH 2018 Report (I): Treating CML during pregnancy

ashlogoThe 60th American Society of Haematology Annual Meeting and Exposition is taking place from 1-4 December in San Diego, USA.

The meeting is providing a huge educational experience and the opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in haematology with the attendance of more than 25,000 health-care professionals as well as many patient advocates.

We are pleased to share with you our first "ASH 2018 Report", contributed by our co-founder Jan Geissler.

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Fellowships available to attend the DIA Europe 2019 Conference

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DIA Europe 2019 is an annual conference organized by the global association DIA that connects life science professionals from many different areas with patients, peers and thought leaders. 

From 5th to 7th February 2019, key thought leaders and healthcare innovators as the industry, academia, regulatory, government agencies, patient, and philanthropic organizations will come from across all disciplines involved in healthcare products and therapies. The meeting is intended to strengthen professionals’ understanding of the value of cross-discipline integration and to foster innovation for better health outcomes. 

For more information, please visit the Dia Europe 2019 website.

Apply for a fellowship by Wednesday, the 5th of December 2018, 12:00 CET

This year's conference will take place at the Austria Center Vienna from the 5th to the 7th of February 2019.

DIA Europe 2019 is offering up to five Full Fellowships and up to fifteen Registration Fee waivers to include the patient representatives input in the conversation.

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Be a part of the Patient Advocacy Program for the 13th Annual Patient, Family and Donor Day

25440264 1522573074501355 2895735619915512176 oThe 45th EBMT (European Society for Blood and Marrow Transplantation) Congress will be held in Frankfurt, Germany during March 24th to 27th, 2019. The EBMT is happy to announce that they have added a new segment to the Congress and would like to introduce the new parallel session "Patient Advocacy Program" which will run as a part of the 13th Annual Patient, Family and Donor Day, taking place on Sunday, March 24th, 2019. 

Be a part of the Patient Advocacy Program for the 13th Annual Patient, Family and Donor Day that is held at the annual EBMT Congress in Frankfurt, Germany.

Patient advocates are invited to participate in this remarkable and essential annual event of the: Patient, Family and Donor Day, that will now include a Patient Advocacy Track and it is free to attend. 

There is also the opportunity to be able to have access to the full EBMT Congress (March 24th – 27th), by applying for a free registration. You will need to be quick to apply as there is a limited amount of 30 available for patient advocates. 

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Welcome, Association Fanomezana LMC! Now 119 patient organisations from 89 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Association Fanomezana LMC, based in Madagascar. The CML Advocates Network now totals 119 member organisations in 89 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

TFR 4 CML patients survey is closed!

TFR 4 CML patients

 

The TFR for CML patients survey is now closed!

The CML Advocates Network launched the online global survey “TFR 4 CML Patients”, available in eleven languages (English, Spanish, German, Italian, French, Finnish, Hebrew, Arabic, Danish, Japanese and Russian) to measure the viewpoints, needs and experiences of CML patients that are considering or have already started Treatment Free Remission (TFR). From March to July 2018, the survey has collected the feedback of more than one thousand CML patients worldwide. 

The findings of the survey will help us to better understand what the concerns, challenges and motivations are during the decision phase, the first probation phase after stopping, and when attempting TFR has either worked or failed.

Now, we start working on the analysis of the results of the treatment-free remission survey to provide the CML global community with a powerful evidence-based patient advocacy tool. Stay tuned for more information about #TFR4CML!

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Webinar: Getting the most out of EHA 2018

The European Hematology Association's annual congress will start in Stockholm, Sweden, this week and we would like to support all CML patient advocates who will be attending with us this amazing meeting.

Our co-founder and member of the EHA European Affairs Committee, Jan Geissler, on behalf of the EuroBloodNET ePAG, presents this webinar on how to get the most of EHA as a CML patient advocate.

Through the webinar, you will be able to know more about topics like:

  • Types of sessions at EHA and their relevance for a CML patient advocate
  • How to set your priorities attending this huge congress.
  • How to find and engage with key opinion leaders at the EHA Posters Sessions.
  • More about EHA Abstracts: how to find them and how to read them. 

You can also find a selection of clinical and translational research abstracts, oral presentations and posters focused on Chronic Myeloid Leukemia. Please, click on the following links to check out the interesting information for CML patient advocates attending #EHA23:

 

 

To know more about the relevant sessions and meetings for patient advocates at #EHA23, the Patient Advocacy Track, the Patient Advocacy Capacity Building Meeting, the Programme at a glance and many more,  please visit our webpage EHA 2018 in Stockholm: Patient Advocacy Programme.

Don't forget to share the webinar with your contacts and see you soon in Stockholm, dear CML advocates! 

EHA 2018 in Stockholm, Sweden: Patient Advocacy Programme

ehaJust two weeks left until the European Hematology Association's annual congress starts in Stockholm, Sweden. Many patients of the hematology community and 17 CML patient advocates will be attending this impressive meeting from June 14-17, 2018 within more than 10.000 hematologists from all over the world.

Over the past months, the Hematology ePAG Project Management Office, coordinated by Nicole and Jan, has been working very closely with the EHA Congress office in order to make this year´s congress a success again.  

Back by popular demand again this year, we have a joint patient advocates booth of all European patient advocacy organisations as well as  “Patient Advocacy Track” session within the scientific program during the Congress. Up to 50 free congress registrations were offered to patient advocates (including 17 advocates interested in CML), so we hope there will be strong patient attendance!

Click  "Read more" to see what has been offered specifically for patient advocates, haematologists and other stakeholders at #EHA23 this year.

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The CML Clinical Trials data-base now lists 51 studies worldwide

 

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The CML Advocates Network inofficial registry on clinical trials currently lists 51 studies:  

 

  • 28 CML studies currently recruiting patients
  • 1 non-CML study also in the recruiting phase
  • 22 studies that are no longer recruiting.

 

 

Check here CML Trials Registry 

 

 

 

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Welcome, Uzbekistan CML patients league! Now 118 patient organisations from 88 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Uzbekistan CML patients league based in Uzbekistan. The CML Advocates Network now totals at 118 member organisations in 88 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

Welcome, Celebrando la Vida, Bolivia! Now 117 patient organisations from 87 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Celebrando la Vida - Asociación de Lucha Contra la Leucemia, based in Bolivia. The CML Advocates Network now totals at 117 member organisations in 87 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

CML Advocates Network with the Rare Disease Day 2018

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Chronic Myeloid Leukemia is a Rare Disease

What is a Rare Disease? 

The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition. In Europe and many other regions, a disease is defined as rare when it affects fewer than 1 in 2000. One rare disease may affect only a handful of patients in the European Union and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

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CML Advocates Network participating at EHA-SWG 2018 Meeting

EHA logoThe European Hematology Association held the “EHA-SWG Scientific Meeting on Integrated Diagnosis Strategies in Oncohematology for the Management of Cytopenias and Leukocytosis” on February 8-10, 2018 In Barcelona, Spain.

The scientific meeting covered all practical aspects of diagnosis of haematological disorders suspected when encountering leukocytosis or cytopenia, with a strong focus on morphology, pathology and flow cytometry.

toni1During three days, the hematological experts put under the spotlight very interesting topics as the following: Pre analytical and analytical considerations; Towards integrated diagnoses: basics of morphology, flow cytometry, cytogenetics and molecular karyotype, molecular technologies; Morphology of granulo-monocytopoiesis: normal, MDS, AML and MPN; Lymphopoiesis, leukemia and lymphoproliferative disorders; New drugs / therapeutic approaches and personalized medicine or Patient’s follow up: MRD and detection of the emergence of resistances.

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