Allan has built his considerable personal network of individuals, patient group representatives, academics, healthcare professionals and companies within the Pompe, Lysosomal disease and GSD communities. He is passionate about involving all members of the community to improve research, healthcare and support.
Allan is a trusted advisor to NHS, industry and academic institutions, always representing the patient perspective when considering proposed research or changes to healthcare standards. Allan often represents IPA at meetings of the European POmpe Consortium (EPOC); a close network of healthcare professionals developing European guidelines for the care, management and treatment of Pompe disease.
Published Papers:
Neuromuscular Disorders, Abstract only, VOLUME 31, SUPPLEMENT 1, S110. OCTOBER 01, 2021
Authors: A. Muir, K. Odedra, N. Johnson, L. Bashorum, A. Patmore, P. Slade, J. Lewthwaite
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"The role of patient advocacy organizations in shaping medical research: the Pompe model". Vol 7, No 13 (July 2019): Annals of Translational Medicine,
Authors: Tiffany House, Kevin O’Donnell, Raymond Saich, Fabio Di Pietro, Ria Broekgaarden, Allan Muir, Thomas Schaller.
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"Review of lysosomal storage disorder clinical and homecare services in the UK" SSIEM2019 Poster presentation.
Page 226 (PDF page 282), Poster abstract P-425. SSIEM2019 Poster presentation.
Authors: Muir A, Barber S, Collin-Histed T, Gibson A, Lewi D, Mathieson T, Stevens R
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12th August 2014, Presented at the GSD Conference in Heidelberg, Germany, November 28-30, 2013
Authors: J. C. van der Meijden, D. Güngör, M. E. Kruijshaar, A. D. J. Muir, H. A. Broekgaarden, A. T. van der Ploeg