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Expanded collaboration supports MPN community

Publish Date: 29/2/2016

Today, on World Rare Disease Day (February 29), the Leukaemia Foundation announces a new step in our relationship with Australians with one of the rare groups of blood cancers called myeloproliferative neoplasms (MPN) and the informal MPN networks that have been established.

MPN is a diverse group of blood disorders and the most common forms include essential thrombocythaemia (ET), polycythaemia vera (PV), and idiopathic myelofibrosis (MF).

The overall aim of working more closely together is to raise awareness of MPN, to advocate on behalf of and with people with MPN, to improve access to new therapies, and facilitate the activities of the groups.

Several years ago the Foundation recognised the need to provide disease-specific support and education for rarer cancer groups, including MPN.

When the Leukaemia Foundation established the national role of MDS/MPN coordinator, this helped facilitate the establishment of MPN patient support groups around the country and development of MPN-specific information booklets, fact sheets and website information.

For many years the Leukaemia Foundation has had a valuable relationship with MPDoz, led by Ken Young, and now we have an informal collaboration with a new group – the Myeloproliferative Neoplasms Alliance Australia (MPNAA).

Lara Chapman and Jolanda Visser head the MPNAA which is focused on establishing a website, and raising funds for education, research and advocacy, under the umbrella of the Leukaemia Foundation, which will coordinate these activities with the MPN community. The Leukaemia Foundation has established a dedicated fund to collect donations from the MPN community to support the collaborative activities of the MPNAA and the Leukaemia Foundation.

We welcome any group dedicated to improving the survival and quality of life of people affected by a blood cancer to contact the Leukaemia Foundation to see how we can work together to achieve these goals. Visit the MPNAA's website here.

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