coiaward2010

Treatment-free remission in chronic myeloid leukemia

nccnguide

Stopping Treatment in CML has now become a standard care with the publication of the NCCN and ESMO guidelines which include stopping treatment outside the context of clinical trials. The ELN recommendations are expected in few months and will relate to this hot topic as well.

At the same time, there are many questions patients have about the process.

In the following video Giora Sharf, the co-founder of CML Advocates Network and a CML patient on TFR for 3.5 years, interviews one of the world CML experts Prof. Giuseppe Saglio from University of Turin Italy, trying to answer some of the concerns CML patients have when thinking about stopping treatment. For example:

 

What is treatment-free remission concept?

What is the longer period of time that a patient has been on TFR?

Who are the patients eligible for TFR?

How many patients have to restart the treatment after TFR and when?

How can the psychological aspects on TFR be overcome?

What is the standard of monitoring a patient on TFR?

To watch to video click here:

 

The CML Advocates Network participating at ESH 2017

esh footerThe 19th Annual John Goodman Conference on Chronic Myeloid Leukemia: Biology and Therapy were held in Estoril, Portugal on12-15 October 2017 organized by the European School of Haematology (ESH).

This event gathers leading scientists in the field of Chronic Myeloid Leukemia treatment including Clinicians as well as Biologists and Medical laboratory technologists.

Although the Programme does not contain specific Patient Advocacy sessions like in other scientific congresses, several patient advocates from different countries have been attending the conference. A number of CML advocates have been participating at this conference and sharing our CML patient's perspective.

Read more ...

Welcome, Power of CML, Egypt! Now 116 patient organisations from 86 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Power of CML based in Egypt. The CML Advocates Network now totals at 116 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

CML Clinical Trials Registry now lists 35 ongoing studies

Word Art 1

Patients wishing to participate in a clinical study often look for a central source of information where they can find easy-to-understand facts on ongoing trials. 

Official trial registries like clinicaltrials.gov or other trial registries are available but tend to be complex and difficult to use for patients.

To fill the need for a single source of information on CML studies in plain language, CML Advocates Network set up an unofficial online CML Trials Registryin 2013.

The database contains a brief description of ongoing CML trials initiated by academia (universities) or pharmaceutical companies.

Currently, 24 clinical studies are listed that are actively recruiting patients. Another 11 studies are still ongoing but no longer including new patients.

Read more ...

Welcome, Philadelphia LMC, Algeria! Now 115 patient organisations from 86 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Philadelphia LMC based in Algeria. The CML Advocates Network now totals at 115 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

EHA 2017 in Madrid, Spain: Patient Advocacy Programme

ehaNot many weeks left until the European Hematology Association's annual congress opens its doors in Madrid, Spain. We are excited to see many of you at #EHA22 2017!

Over the past months, we've been working hard with the EHA team to set up an attractive patient advocacy programme during the congress.  We have a joint booth of all European patient advocacy organisations, and once again also having a “Patient Advocacy Track” within the scientific program during the congress. Up to 50 free congress registrations were offered to patient advocates, so we hope there will be strong patient attendance!

Click on "Read more" what is offered specifically for patient advocates, hematologists and other stakeholders at EHA this year.

Read more ...

Please donate!

Please donate!

LogIn