European Reference Networks, a unique opportunity to take collaboration and patient care in hematology to the next level, was a core topic at EHA 2016

ERNThe 21st European Hematology Association’s Congress (EHA, 9-12 June 2016) was abuzz with networking between over 10.000 participants who travelled from all over the world to Copenhagen. The EHA Congress combined sessions and a diverse range of topics around Hematology highlighting state-of-the-art clinical practice, recent advances, new data and views from different stakeholders and international organizations. A hot topic this year were the European Reference Networks (ERNs). The CML Advocates Network is actively engaged in the upcoming ERN on rare hematological diseases.

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Please sign the petition to reconsider India's government decision of levying customs duty on donated CML drug

Please sign this petition run by the Indian patient organisation "Friends of Max", calling on the Indian government to reconsider their government decision of raising significant import taxes on free Glivec donated to Indian CML patients through a patient assistance programme. For the past 13 years, Glivec was provided for free as a donation to CML patients, but now the Indian government may raise import taxes on a hypothetical financial value of the donated Glivec. This threatens the continuation of the free donation of the drug to thousands of CML patients in India. Please sign the petition at Change.com.

Free EHA congress registrations for representatives of hematology patient organizations: Deadline 3 May 2016!

ehaThis year's EHA Congress will be held 9-12 June 2016 in Copenhagen, DK. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program.

As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Copenhagen. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.

If you are interested in a free registration, please state your interest in a free registration here.

Deadline for free registrations is 3 May 2016! There will be no extension of the deadline and no late registrations. EHA, MDS Alliance and CML Advocates Network will do their best to allocate the 50 free registrations fairly amongst organisations and advocates. Please note that registrations are to be confirmed by the EHA office -- the MDS Alliance and CML Advocates Network just collect statements of interest on behalf of the patient community. We will let applicants know as soon as possible.

For more information on the 21th EHA congress, see here.

Register now for CML Horizons 2016, 6-8 May 2016, Ljubljana, Slovenia

CML-Logotip-Ljubljana-2016-2We are looking forward to the 14th CML Horizons conference, held in Ljubljana / Slovenia on 6-8 May 2016. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community, and provides a unique opportunity for participants to share experiences and best practice. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.

Registration is now open for leaders of CML patient organisations.

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Free EHA congress registrations for representatives of patient organizations: Deadline 24 March 2015!

ehaThis year's EHA Congress will be held 12-15 June 2015 in Vienna, Austria. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program. A team of leading patient advocates is currently working on the sessions for the EHA Patient Advocacy track and making a great effort to cover topics of priority for patients across diseases that are – at the same time - attractive to hematologists.

As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Vienna. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.

If you are interested in a free registration, please reserve your free registration here.

Deadline for free registrations is 24 March 2015! Please also note that the free registration are subject to confirmation by the EHA office - the CML Advocates Network just collects statements of interest on behalf of the patient community.

For more information on the 20th EHA congress, see here.

Register now for CML Horizons 2015, 1-3 May 2015, Barcelona, Spain!

cmlhz15logoWe are looking forward to the 13th CML Horizons conference, held in Barcelona / Spain on 1-3 May 2015. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community, and provides a unique opportunity for participants to share experiences and best practice. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.

Registration is now open for leaders of CML patient organisations.

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