Events & Clinics

Events and MPS clinics

Events – Conferences and Family Events

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Many individuals and families suffer isolation when a rare condition like one of the MPS or related diseases is diagnosed. They can often feel shut off and very much alone. Imagine for one moment telling someone your child has MPS or Fabry disease, the normal response is a total blank, confusion or even embarrassment. The result can be isolation. MPS Society events for families and individuals affected by MPS and related diseases break down the isolation, enable experiences to be exchanged, bring understanding, care and support and for many, the development of lasting friendships.

MPS Regional Clinics

Ellie & Ethan Greening approved

MPS regional clinics are held across the UK in Manchester, Belfast, Birmingham, Bristol, London and Newcastle.

The purpose of these clinics is to allow individuals to regularly see a specialist consultant and where possible other medical professionals, hopefully limiting the number of separate appointments individuals and families have to attend.

The clinics also allow individuals and families to meet together and to access support from the MPS Advocacy team, who also attend.

Great Ormond Street Hospital

  • MPSI – 26 Feb 2019, 25 Jun 2019, 10 Sep 2019, 9 Jan 2020
  • MPSIII – 12 Mar 2019, 28 May 2019, 9 Jul 2019, 24 Sep 2019, 10 Dec 2019, 26 Feb 2020
  • MPSIV – 26 Mar 2019, 23 Jul 2019, 8 Oct 2019

Birmingham Children’s Hospital

  • MPSI – 17 May 2019
  • HSCT & MPS I – 21 Jun 2019
  • MPSII – 15 Mar 2019,
  • MPSIII – 19 Jul 2019
  • MPSIII & LSDs & MSD, MLII – 18 Oct 2019, 20 Dec 2019 (am)
  • MPSIVa – 18 Jan 2019, 16 Aug 2019
  • MPSVI – 15 Nov 2019
  • Fabry – 15 Feb 2019, 20 Feb 2019

Royal Manchester Children’s Hospital, Willink Unit

  • POST HSCT 0-10 years – 18 Jan, 12 Apr, 12 Jul, 11 Oct 2019
  • POST HSCT 10 years plus – 25 Jan, 26 Apr, 19 |Jul, 19 Oct 2019