Hidden disorders, emerging solutions - the evolving agenda for rare neurological conditions

Neurology Academy session

A focused, high-impact webinar exploring how the 2026 England Rare Disease Action Plan will reshape neurology services. With a new national commitment to tackling health inequalities, this session will highlight what the updated agenda means for clinicians,
service leaders and those working across rare neurological pathways.

The webinar aims to provide a clear, actionable overview of how the rare disease agenda is evolving and what can be done today to deliver more equitable, timely and consistent care for people living with rarer neurological conditions.

Session 1

Unpacking the 2026 England Rare Disease Action Plan for rare neurological conditions
Georgina Carr, CEO, Neurological Alliance

Objectives

• Outline the key points from the Action Plan relevant to neurology.
• Detail how rarer neurological conditions are represented within the plan.
• Highlight areas requiring further focus to reduce existing service deficits.

Session 2

Tackling unwarranted variation
Dr Vasantha Gowda, consultant paediatric neurologist, Guy's and St Thomas' NHS Foundation Trust

Objectives

• Identify where inequity and unwarranted variation arise in rare disease recognition and diagnosis.
• Detail the challenges encountered during investigation and referral.
• Highlight how screening programmes and the evolving treatment landscape have influenced practice in the management of babies with SMA Type 1.

Session 3

Practical actions to reduce delay and variation in rarer neurological conditions
Dr Lucy McKay, CEO, Medics for Rare Disease

Objectives

• Highlight practical actions that can reduce delays and variation in care.
• Explore how adopting a red-flag mindset can improve recognition and management.
• Demonstrate the benefits of a minimum referral dataset alongside clear safety-netting and escalation pathways within clinics.