Blog

February 8, 2021

The UK Rare Diseases Framework – New hope, or same-old, same-old?

A blog post by our Trustee and CEO of Ataxia UK, Sue Millman In general, most neurological services for people with ataxia haven’t fared well during the Covid-19 pandemic, and it’s the same right across neurology. Most face-to-face outpatients’ clinics have been cancelled, or changed to telephone appointments or virtual consultations – with serious consequences […]
January 20, 2021

Returning to work in 2021…

Katharine McIntosh, our Policy and External Affairs Manager, returns to work this month having been on maternity leave since April 2020. Here she writes about her hopes for 2021, and what it feels like to return to work amidst the significant impacts of COVID-19 on people with neurological conditions and the health and care system. […]
January 20, 2021

My priorities as Chair of the Alliance

Our new Chair and Chief Executive of the MS Trust, David Martin, sets out his priorities for the future of the Alliance and care for people affected by neurological conditions. We will be pumping up the volume at the Neuro Alliance in 2021 so that more people across the neurology sector get to have their […]
November 12, 2020

Out of the Shadows: our new report launched today on the need for a better deal for people with rare neurological conditions

Dr Wendy Edwards of PSPA tells us how important our new report, Out of the Shadows, is for shining a light on rare neurological conditions, to improve the care and support people with rare neurological conditions receive along the whole care pathway Following nine months of consultation, the rare neurological conditions report, ‘Out of the Shadows’, has […]
August 13, 2020

“The resilience of Polio survivors seems to shine in the most difficult times”

Responding to COVID-19: voices from our membership We have been asking our memberships to share their experiences of COVID-19. Kripen Dhrona is Operations Director at the British Polio Fellowship, one of our newest members. He shares the Fellowship’s experience of coping with COVID-19, and how they are meeting some of the challenges they have been facing. […]
August 11, 2020

Working together: an example from Hampshire

Responding to COVID-19: voices from our membership COVID-19 has profoundly changed our lives. One possible positive change is changing how we work and collaborate with one another, as we face this virus together. We asked Anne Meader, Chair of the Hampshire Neurological Alliance and Secretary of Carers Together, to share her positive experience during these unprecedented times. Bronze […]