Author: Admin

Here at the Acute Leukemia Advocates Network (ALAN), we recognise the importance of informing our work based on the patient and carer experience.

That’s why this September for Blood Cancer Awareness Month, ALAN is supporting Leukaemia Care’s Spot Leukaemia campaign. The campaign seeks to raise awareness of leukemia and the key symptoms to spot. The campaign was directed by Leukaemia Care’s patient experience survey that identified a number of issues in patient experience at diagnosis.

You can find out about the campaign here: www.leukaemiacare.org.uk/spot-leukaemia

Leukaemia Care’s patient experience survey was one of the biggest done to date (including 500+ acute leukemia patients), which is significant for directing future work in a patient focussed and evidence based manner.

For example, the survey found that 44% of acute leukemia patients experienced symptoms for over a month before visiting their general practitioner (GP). This highlights an issue with the public recognising the signs and symptoms of leukemia, leading to a delay in diagnosis. The quickly progressing nature of acute leukemia means that a delay in diagnosis and treatment could significantly impact the patient’s outcome.

Read more about the Living with Leukaemia survey at: www.leukaemiacare.org.uk/living-with-leukaemia

In order for the work of global patient advocate groups to be similarly focused, ALAN is developing a Global Quality of Life Survey for acute leukemia patients and caregivers.

In June, at the European Haematology Association conference, members from acute leukemia patient advocate groups across the globe joined together to discuss the creation of an Acute Leukemia Advocates Network (ALAN).

ALAN has now been formally founded, hosted by the Leukemia Patients Advocates Foundation. ALAN aims to build capacity in the members of the network to deliver tailored services to acute leukemia patients and carers on the national level, while joining forces between organisations on the policy and research level across countries.

The steering committee has been elected and we are pleased that Zack Pemberton-Whiteley, Head of Campaigns and Advocacy at Leukaemia CARE has been appointed as Chair. Other members of the steering committee are: Sofia Sá Cardoso (Treasurer), Anita Waldmann, Jan Geissler, Diego Villalón García and Sophie Wintrich.

Non-profit patient organizations, with a sole or partial focus on acute leukemia, are eligible to apply for membership of ALAN.

Zack Pemberton-Whiteley commented: “The creation of ALAN is a positive step forward for acute leukemia patients. ALAN provides the opportunity to strengthen the work and the voice of advocates across the globe. Both patients and carers will benefit from the development of tailored information and support services for acute leukemia. Patient advocacy organisations, such as Leukaemia CARE, will also be better equipped to support patients and carers by learning best practices from one another.”