The UK's sole charity dedicated to two rare neurological conditions is set to host a pivotal community event in Lincoln next month, aiming to tackle a significant shortfall in awareness and care.
Bridging the Support Gap for Rare Conditions
The PSPA (PSP Association) will hold a dual-purpose gathering at the Petwood Hotel (LN10 6QG) on Wednesday, March 25. The charity focuses on Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), which are life-limiting diseases affecting an estimated 10,000 people nationally.
Due to the rarity of these conditions, individuals frequently endure a diagnostic odyssey, sometimes waiting up to three years for an accurate identification. This prolonged uncertainty often leads to profound feelings of isolation and confusion for patients and their loved ones.
Morning Session: A Lifeline for Families and Carers
Running from 9am to 1pm, the morning segment is designed for families and carers. It offers a vital opportunity to connect with others who share similar experiences, forge local support networks, and receive the latest clinical updates from leading experts. The session will conclude with a provided light lunch.
Afternoon Session: Equipping Healthcare Professionals
From 1.15pm to 4.30pm, the focus shifts to local clinicians, including GPs, nurses, and allied health professionals. This segment is crafted to deliver specialist knowledge, helping practitioners recognise early symptoms, understand disease progression, and implement effective management strategies. Refreshments will be available throughout.
First of Many 2026 Community Initiatives
The Lincoln event marks the first in a series of community-based programmes the PSPA plans to deliver across the UK in 2026. The goal is to dramatically improve understanding and care pathways for PSP and CBD.
Carol Amirghiasvand, PSPA's Director of Service Development and Improvement, explained the urgent need: "Living with a rare neurological condition can feel incredibly isolating. Often, family and friends have never heard of it, and healthcare professionals may have limited experience managing such complex and changeable symptoms."
"Our Lincoln event is about presence," she continued. "We are taking our mission directly into communities to ensure nobody faces these diseases alone. We are equally committed to arming local clinicians with the practical tools they need to deliver the best possible care."
One of the confirmed expert speakers for the day is Dr Tim Rittman from Addenbrooke's Hospital.
Attendance is completely free for both families and healthcare professionals. However, registration is essential. Interested parties are asked to secure their place via the Eventbrite page: www.eventbrite.co.uk/e/2026-pspa-regional-awareness-event-lincolnshire-tickets-1980374148388.
For further information about PSP and CBD, visit the PSPA's main website at www.pspassociation.org.uk.
