Important Guillain-Barré Syndrome (GBS) Events in the UK for 2024

August, 2024

Guillain-Barré Syndrome (GBS) is a rare neurological disorder that can cause muscle weakness, tingling, and even paralysis. Raising awareness and providing support for those affected by GBS is crucial. Events and gatherings connect patients, caregivers, and medical professionals, offering vital information and support. This article highlights the key GBS Guillain-Barre Syndrome events in UK, providing an overview of their importance and the opportunities they present for the GBS community.

Key GBS Events in the UK for 2024

GBS Patient Meetups – Monthly

Monthly GBS patient meetups, organized by local chapters of GAIN Charity and in cities across the UK, provide a regular space for patients and caregivers to connect, share experiences, and offer mutual support. They provide a valuable opportunity for face-to-face interaction and community building.

Walk for GBS – September 2024

The Walk for GBS event in September 2024 is a nationwide initiative to raise funds and awareness for GBS. Participants can join organized walks in various cities or participate virtually. This event raises crucial funds for research and support services and fosters community among participants.

GBS Awareness Day – October 2024

GBS Awareness Day, celebrated in October, is dedicated to increasing public awareness about Guillain-Barré Syndrome. This day includes educational webinars, support group meetings, and fundraising events across the UK. The goal is to inform the public, support research, and build a community of support for those affected by GBS.

GAIN Charity Winter Fundraiser – December 2024

Scheduled for December 2024, the GAIN Charity Winter Fundraiser is a significant event aimed at raising funds for GBS research and support services. This fundraiser includes a charity auction, dinner, and guest speakers, allowing the GBS community to unite and support ongoing efforts.

The Immunoglobulin Shortage: A Growing Crisis

Immunoglobulin therapy is vital for GBS patients, but the growing demand has caused a significant shortage. Recent statistics predict that the global market for immunoglobulin products will increase by 6-8% annually while the supply struggles to keep up. This gap between supply and demand leads to limited availability and higher costs, placing patients in a difficult position.

The Cost Trap: A Financial Burden

The cost of GBS treatment can be significant. For example, immunoglobulin therapy can cost over £8,000 per session, and patients often need multiple sessions over an extended period. Because it’s so expensive and hard to find, lots of patients might need to look for other ways to pay for their treatment or might not be able to get the care they need, which could make their health even worse.

Beating the Cost Trap

Insurance and Assistance Programs

Understanding your insurance policies is important to ensure you get the most coverage for immunoglobulin therapy. Patients should also look into assistance programs from pharmaceutical companies and non-profit organizations that can help offset treatment costs.

Government Support

Supporting governmental policies that reduce the cost of immunoglobulin therapy can bring much-needed relief. Countries like Canada and parts of Europe with solid healthcare systems have good examples of organizing this support.

Community Support

Support groups and community organizations are vital for providing financial and emotional support to GBS patients. Our book, “A Solitary Confinement,” gives GBS patients helpful information and connections to others in similar situations to deal with these challenges and stay positive during their journey.

A Solitary Confinement: Helping GBS Patients

At A Solitary Confinement, we understand the struggles faced by GBS patients. Our mission is to provide financial assistance and connect patients with essential resources. We focus on holistic care, aiming to improve the lives of those with GBS and help them overcome the challenges of this condition. “A Solitary Confinement” by Robin Sheppard chronicles his journey with GBS, offering a compelling read filled with humor, defiance, and inspiration. Available on Amazon, this book is a testament to resilience and hope.