GAIN (Guillain-Barre & Associated Inflammatory Neuropathies)

What we do

Each year, 1-2 people per 100,000 are diagnosed with Guillain-Barré syndrome (GBS); a rare autoimmune disorder causing rapidly ascending paralysis, usually triggered by a viral or bacterial infection. Around 80% slowly recover, 5-10% do not survive and 10-15% experience long-term issues ranging from limited dexterity to lifelong dependency on a wheelchair. A further 1-2 people per 200,000 will be diagnosed with CIDP, a chronic form of the syndrome requiring ongoing and often lifelong treatment.

GAIN has three charitable objectives:

• Helping people understand and manage GBS, CIDP and the associated variants
• Promoting and facilitating both clinical and non-clinical research
• Raising awareness of the charity and conditions amongst medical professionals and the public

The global pandemic has hit the charity sector hard. Because no other organisation in the UK does what we do, our main and most urgent aim is keeping the charity alive so we can continue to offer support and information to people affected by these debilitating and often life-changing conditions. The coming years will be tough, but with the help of our donors and supporters, we will continue: 

• Sharing information and support with newly diagnosed patients and their families
• Keeping our helpline and other communication channels open and operational
• Paying travel expenses for hospital visits
• Providing communication aids for patients who are ventilated
• Offering peer support with phone calls and video chats
• Funding studies and research
• Spreading awareness of the conditions