Allan Muir

Allan Muir

Chair of the Board of Trustees

Posted On: 08/05/2020

As the parent of a son with Pompe disease, Allan has been involved with the Pompe Community for over 25 years; managing a national charity that supports Glycogen Storage Diseases for 9 years and is currently vice-chair of the International Pompe Association.

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:

EP.201 Living with Pompe disease in the UK: characterizing the patient journey and burden on physical, emotional and social quality of life

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


"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.


"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


Ten years of the international Pompe survey: patient reported outcomes as a reliable tool for studying treated and untreated children and adults with non-classic Pompe disease

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