MPS Society conference

MPS Society conference
on paediatric and adult perspectives in management and
treatment of mucoploysaccharide, fabry and related diseases

7-9 July 2017
Coventry, UK


Book your place   See the programme   Award nominations    Become a volunteer

In 2017 we celebrate the 35th anniversary of the Society for Mucopolysaccharide Diseases – and what an amazing 35 years they have been! In 1982, at its conception, there were just 40 MPS families in the MPS Society. At our first MPS family weekend conference in September 1983 in Walsall, Birmingham, 50 MPS families participated, hungry for information.

Our MPS weekend conference programmes have, and continue, to highlight the latest developments in clinical management and treatment ensuring those at the coal face, our members, have the most up to date information available as well as the opportunity to network with experts in the MPS community including clinicians and healthcare professionals, scientists and researchers, all under one roof over one weekend.

The 2017 weekend conference in Coventry offers a fitting opportunity to reflect upon and celebrate the successes of the MPS Society over the past 35 years.

Book a place

There’s still time to book a place for the conference. You can either download the programme and booking form to send back to us or book online.

Be a childcare volunteer

We are always on the look out for fun and energetic volunteers who are willing to make our children and vulnerable adults’ programme possible. If you are interested in volunteering or just want to know more request a call back.

Make a nomination for the awards

We are celebrating our 35th Anniversary at the conference by recognising family members of the MPS Society who have shown ‘Courage over Adversity’.

The recipients of these awards will have demonstrated how they have used their personal experience of MPS, Fabry or a related lysosomal storage disease to not only meet the challenge of MPS but build on their experience to benefit the wider community including the MPS Society.

If you know someone who has shown ‘Courage over Adversity’ and is worthy of an award you can nominate them in the following categories:

Members of the MPS Society who are:

  • Adults (18 years and over) living with MPS, Fabry or a related Lysosomal disease
  • Parents whose child (of any age) is living with MPS, Fabry or a related Lysosomal disease or has died from MPS, Fabry or a related Lysosomal disease

Non-members who are:

  • Grandparents whose grandchild(ren) (of any age) is living with MPS, Fabry or a related Lysosomal disease or has died from MPS, Fabry or a related Lysosomal disease
  • Young people (13–17 year) living with MPS, Fabry or a related Lysosomal disease
  • Siblings (13 years and over) whose brother(s) and or sister(s) have or have lost their life to MPS, Fabry or a related Lysosomal disease

To make a nomination download the nomination form and either return by email or post to Barbara Cotterell, MPS Society, MPS House, Repton Place, White Lion Road, Amersham, Bukcs, HP7 9LP.

More about the conference

This unique conference is dedicated to sharing the most up to date information available on the clinical management and treatment of MPS, Fabry and related diseases as well as clinical trials and research.

Our Saturday programme offers three separate conferences running in parallel and focusing on:

  • Conference A – MPS I, MPS II (not progressive CNS), MPS IVA, MPS VI, LAL D (late onset), ML III and Mannosidosis.
  • Conference B – MPS II (progressive CNS), MPS IIIA, B, C, D, LAL D (infantile) and rare related diseases.
  • Conference C – Fabry disease.

As well as the professional presentations each conference will contain a variety of talks reflecting the personal experiences of members affected by these diseases. The programme also offers the unique opportunity for all those participating to meet and share experiences in a relaxed environment.

This conference is open to all those living with or affected by MPS, Fabry or a related diseases as well as health, social care and educational professionals. This is an unmissable event for those personally or professionally involved in caring for a child or adult with MPS, Fabry or a related disease.

To enable parents and carers to make the most of the weekend conference affected children and their siblings, aged 17 years and under along with affected vulnerable adults will have their own social programme packed full of fun and stimulating activities and outings.

The venue

The conference venue is the Hilton Hotel Coventry, ideally located just off Junction 2 of the M6/M69 interchange, only 20 minutes drive from the NEC Birmingham. The hotel is open plan, spacious and spread over four floors with the conference facilities on the ground and first floor. The restaurant and some of the bedrooms are on the ground floor.

Hilton Hotel rooms will be given as a priority to families with children. Ground floor bedrooms will be allocated on a first come, first serve basis with priority being given to those with wheelchair needs although there are two lifts to the other three floors.

The hotel benefits from its own indoor heated swimming pool. Other leisure facilities include the Livingwell Health Club with an air conditioned gym, sauna and steam room. Beauty treatments and massages are available by appointment. These facilities will be available to all guests over the course of the weekend (subject to a cost). Guests arriving on the Friday will be able to use the hotel facilities, however bedrooms are not guaranteed to be ready until 3pm.

If the bedrooms at the Hilton Hotel are oversubscribed, alternative accommodation has been booked with the Premier Inn which is based very close to the Hilton Hotel, with a shuttle service running between, so it is vitally important that MPS families in particular book early. Accommodation at the Hilton Hotel is on a first come first served basis, with priority given to families with children.

Hilton Hotel
Paradise Way
Walsgrave Triangle
Coventry
CV2 2ST
Tel: 0247 660 3000
www.coventry.hilton.com

Premier Inn
Gielgud Way
Cross Point Business Park
Coventry
CV2 2SZ
Tel: 0871 527 8266
www.premierinn.com