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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.

Read more ...

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

 

screenshot ctrials

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 

 

 

 

Read more ...

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

horizons17

 

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.

Read more ...

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Sunday, 17 June 2018