Events and MPS clinics
Events – Conferences and Family Events
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.
- Weekend for bereaved families • Warner Leisure Hotel, Thoresby Hall, Nottinghamshire – 13th-16th October 2017
- Childhood Wood planting – 15th October 2017
- 15th Annual International Symposium on MPS and Related Diseases • San Diego, California – 1st-4th August 2018
- MPS I Expert and Patient Meeting • Hilton, Northampton – 28th-29th April
- MPS II Expert and Patient Meeting • Hilton, Northampton – 28th-29th April
MPS Regional Clinics
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 – 12th Sep, 28th Nov
- MPS III – 26th Sep, 12th Dec
Birmingham Children’s Hospital 2017 and 2018
- MPS IV – 15th Sep 2017, 19th Jan 2018, 17th Aug 2018
- MPS III – 18th Aug 2017 (pm), 20th July 2018 (am), 21st Dec 2018
- Transition clinic – 29th Sep 2017 (pm)
- Fabry – 20th Oct 2017 (pm), 16th Feb 2018 (am), 20th July 2018 (am), 21st Sep 2018 (am)
- LAL – 16th Feb 2018 (am), 21st Sep 2018 (am)
- Mixed clinic – 18th Aug 2017 (am)
- MPS II – 17th Nov 2017, 16th Mar 2018, 19th Oct 2018
- MPS VI – 29th Sep 2017 (am), 18th May 2018, 21st Dec 2018
- BMT – 15th June 2018
- MPS I – 15th June 2018, 16th Nov 2018 (am)
Queen Elizabeth Hospital Birmingham 2017
- Adult Fabry – 8th Aug, 12th Sep, 10th Oct, 14th Nov, 12th Dec
Royal Manchester Children’s Hospital 2017
- Post HSCT clinic (over 6 years) – 29th Sep
- Post HSCT clinic (under 6 years) – 6th Oct