The first European LGMD2I/R9 Community Conference was held in May

Following the success of the 2023 UK LGMD community day in Newcastle, the JWMDRC were approached to organise a European level community event for LGMD R9. This event took place on 25th May 2024 at the Double Tree Hotel in Amsterdam. 113 people attended, with patients, family members, patient advocacy organisations, industry stakeholders and medical experts all represented. Attendees represented 14 different countries.

The opportunity to connect was valued by all and was a common theme in the feedback. One participant stated:

“By far the best element of the conference was meeting other people with LGMD2i, sharing stories, experiences and advice. Meeting experts was also hugely beneficial.”

Professor Volker Straub’s personal highlight was also unexpectedly reconnecting with a patient he had diagnosed when still practicing in Germany- 20 years ago!

“The opportunity to interact with the community and have the time to really listen to community priorities and challenges outside of the clinic room is so important for all of us - and particularly valuable working in in rare disease research. This is an exciting time for LGMD2I/R9 with clinical trials in progress, but we move forwards faster working collectively as a multi stakeholder community sharing information in both directions.”

The JWMDRC would like to thank all sponsors who, through their support, enabled this event to take place, the many illustrious colleagues who gave their time generously to benefit the community and most importantly those living with LGMD2I/R9 who were able to attend.  We are delighted to share recordings of this event with those who were unable to join in person.

This event was inspired by Dr Kathy Mathews who was awarded a prize in Amsterdam for her long standing work leading the development of the international LGMD2I/R9 community.

The JWMDRC was thrilled to attend this event to give presentations and meet with the community. Volker Straub gave a welcoming talk which was followed by a talk by Lindsay Murphy on the Global FKRP Registry, Meredith James discussed Physiotherapy Management and Robert Muni Lofra presented "Respiratory Involvement & Management in LGMD2I/R9".

All presentations were recorded and you can find the playlist on our YouTube channel here.

A photo of the Newcastle organising team! Dr Lindsay Murphy, Heather Hilsden, Prof Volker Straub, Jess Elliot and Dan Riseborough:


Heather Hilsden

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