Tag: Germany

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 Chronic Lymphocytic Leukemia (CLL), and to recommend solutions and actions to mitigate those risks.

The CLL Advocates Network (CLLAN) is acting as 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 54 networks and national organisations of the global patient advocacy community as well as 17 renowned medical societies and representatives from the global clinical community. You can access the full list of endorsers here.

The statement incl. all latest updates is now available HERE for you to use and share.

For more information about the coalition, please click HERE.

While we are all watching with growing concern the humanitarian crisis in Ukraine, our friends at Lymphoma Coalition have worked to the limits of their ability to set up an Ukraine Conflict Response Hub that includes a list of resources for those needing assistance. It also enables those in need to seek direct and individual support.

Lymphoma Coalition has built a collaboration amongst Member organisations and other existing partners and allies in Central and Eastern Europe, also including select pan-European organisations and scientific societies. Together, they are making every effort to provide concrete help, identifying tangible ways to assist patients in need and supporting the efforts of healthcare professionals across borders. This initiative is based on ongoing communications with haematologists in Ukraine, who have voiced how the broader lymphoma community can best assist.

To learn more about the actions being taken, please visit the respective section on the Lymphoma Coalition´s website: https://lymphomacoalition.org/ukraine-conflict-response/

Thanks to the Lymphoma Coalition for taking the lead in providing ad hoc support to those who need it the most! We are very grateful for your initiative and ongoing efforts.

To access the CLL Advocates Network´s Solidarity Statement with Ukraine, please click here.

The CLL Advocates Network is deeply saddened to learn about the passing of our friend Neil Graham, Founder and Executive Director of CLL Advocates Network New Zealand, a member of the international CLL Advocates Network (CLLAN). Neil passed away on November 15, 2021. He was the driving force and inspiring leader behind CLL Advocates Network New Zealand and gave an enormous amount of his time and professional expertise to establishing the organisation and advocating for the interests of CLL patients.

The CLL Advocates Network would like to express its deepest condolences to family, close friends and his exceptional team at CLL Advocates Network New Zealand who will continue Neil´s legacy.

As a physician and CLL patient himself, Neil gave a great deal of personal time to talking with and meeting CLL patients. Neil also maintained a persistent and consistent focus on getting better treatments for CLL patients, regularly engaging with Pharmac officials, petitioning and making submissions to Parliament, appearing before the Health Committee and the Pharmac Review Panel and engaging with media. Neil felt strongly about improving public understanding of CLL and providing better information for people living with it.

Over the years, the CLL Advocates Network and Neil developed a strong relationship. Neil was a speaker at CLL Horizons conferences and a great friend to the community. Unfortunately, health did not allow him to attend CLL Horizons 2021 – he had to cancel his attendance very short notice.

Read more about Neil, his organisation and the impact he has made for patients in New Zealand here.

The CLL Advocates Network is shocked and saddened by the events in Ukraine. We strongly condem all forms of attack on the fundamental values of freedom, democracy and self-determination and support a call for an immediate end to the current hostilities. We stand in solidarity with the Ukrainian people, and with all those affected, particularly those who find themselves living with a cancer such as chronic lymphocytic leukemia (CLL).

We are working with other networks to support blood cancer patients affected by the war. In the meantime, we would recommend you to visit Ukraine Conflict Response Hub that has been set up by our friends at Lymphoma Coalition. The Hub includes a list of resources for those needing assistance. It also enables those in need to seek direct and individual support. Congratulations on this fabulous resource!

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 Chronic Lymphocytic Leukemia (CLL), and to recommend solutions and actions to mitigate those risks.

The CLL Advocates Network (CLLAN) is acting as 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 51 networks and national organisations of the global patient advocacy community as well as 16 renowned medical societies and representatives from the global clinical community. It´s great to see that new endorsers are joining almost on a daily basis.

The statement incl. all latest updates is now available HERE for you to use and share.

For more information about the coalition, please click HERE.

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 Chronic Lymphocytic Leukemia (CLL), and to recommend solutions and actions to mitigate those risks.

The CLL Advocates Network (CLLAN) is acting as 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 been endorsed by networks and national organisations of the global patient advocacy community as well as renowned medical societies and representatives from the global clinical community. It´s great to see that new endorsers are joining almost on a daily basis, with the British Society of Haematology being the latest proud addition to this growing list of supporters.

The statement incl. all latest updates is now available HERE for you to use and share.

For more information about the coalition, please click HERE.

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 Chronic Lymphocytic Leukemia (CLL), and to recommend solutions and actions to mitigate those risks.

The CLL Advocates Network (CLLAN) is acting as 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 been endorsed by networks and national organisations of the global patient advocacy community as well as renowned medical societies and representatives from the global clinical community. We are proud to announce that since its launch on 21 February, additional patient organisations and haematology societies (among them the European Hematology Association EHA) have confirmed their interest in endorsing the statement!

The statement incl. all latest updates is now available HERE for you to use and share.

For more information about the coalition, please click HERE.

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 Chronic Lymphocytic Leukemia (CLL), and to recommend solutions and actions to mitigate those risks.

The CLL Advocates Network (CLLAN) is acting as 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 been endorsed by networks and national organisations of the global patient advocacy community as well as renowned medical societies and representatives from the global clinical community.

The statement is now available HERE for you to use and share.

For more information about the coalition, please click HERE.

The CLL Advocates Network is looking for a well-organised, agile, and detail-oriented Administrative Coordinator to join our team. The Administrative Coordinator provides administrative, project and network management support and reports to the network´s Project Manager.

Position type: Part time (20-25 h/week).

Contract: Self-employed, independent contractor.

Pay rate: Remuneration will be commensurate with qualifications and experience.

Working hours: Flexible unless required to attend internal and external meetings

Location: International – remote working.

Travel: Currently nil. Potentially, few days per year post-pandemic.

Start date: March 2022

Probation period: 6 months

Should this be of interest, please read the FULL JOB DESCRIPTION and apply by sending a cover letter and your CV to Nicole Schroeter (CLLAN Project Manager) at info@clladvocates.net

Join our team! We are looking forward to receiving your application!

The CLL Advocates Network has updated it´s COVID-19 and CLL Statement. The latest statement dd. 25 January 2022 is now available on the website.

Currently the statement is only available in English language. If you can help translate the statement into your respective language so that as many people as possible can benefit from the information therein, we would be grateful for support. Please contact us at info@clladvocates.net to ask for the editable files.

Stay safe!