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 Weekend Conference 2017 • Hilton, Coventry – 7th July–9th July 2017 – Programme and booking form now available or Book Online Here
  • Weekend for bereaved families • Warner Leisure Hotel, Thoresby Hall, Nottinghamshire – 13th-16th October 2017
  • Childhood Wood – 15th October 2017
  • 15th Annual International Symposium on MPS and Related Diseases • San Diego, California – 1st-4th August 2018

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 2017

  • MPS IV – 25th Jul, 10th Oct
  • MPS I BMT – 27th Jun, 12th Sep, 28th Nov
  • MPS III – 11th Jul, 26th Sep, 12th Dec

Birmingham Children’s Hospital 2017

  • MPS IV – 15th Sep
  • MPS III – 21st Jul, 18th Aug (afternoon)
  • Transition clinic – 29th Sep (afternoon)
  • Fabry – 20th Oct (afternoon)
  • MPS I – 16th Jun (afternoon)
  • BMT – 16th Jun (morning)
  • Mixed clinic – 18th Aug (morning)
  • MPS II – 17th Nov
  • MPS VI – 29th Sep (morning)

Queen Elizabeth Hospital Birmingham 2017

  • Adult Fabry – 13th Jun, 11th Jul, 8th Aug, 12th Sep, 10th Oct, 14th Nov, 12th Dec

Manchester Children’s Hospital 2017

  • Post HSCT clinic (over 6 years) – 14th Jul, 13th Oct
  • Post HSCT clinic (under 6 years) – 7th Jul, 6th Oct