Mark and Katy Styles?attended a lobbying event on behalf of the MNDA as part of the Specialised Health care Alliance in the House of Lords.? They?managed to speak to Julian Brazier our MP about specialised commissioning within the NHS and how many different hospitals and services?they are involved with. People living with MND require many services and see many different consultants in many different locations. We? discussed the frustrations of this and how the MNDA fund Care Centres throughout the country, which should be funded solely by the NHS.

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It was great to meet up with other representatives from other rare diseases who all had the same issues about getting specialised care.??They chatted to more MPs, informally throughout the day including MPs from Northern Ireland. They were all incredibly supportive of?their work raising the profile of MND.