Castleman Disease Collaborative Network

Castleman Disease Collaborative Network

by | 25 May 2023 | Testimonial

Patient groups like Beacon provide critical information and resources to help the rare disease community get closer to (repurposed) treatments for devastating illnesses. As someone who is literally alive today thanks to a repurposed drug that I discovered and tested...
Pitt Hopkins UK

Pitt Hopkins UK

by | 25 May 2023 | Testimonial

I found out about Findacure (now Beacon) by chance back in 2014. There was going to be a workshop on Fundraising while I was in London, so I called Flóra to ask if I could come even though it was last moment. I didn’t realise that was one of the first workshops to be...
Wolfram Syndrome UK

Wolfram Syndrome UK

by | 25 May 2023 | Testimonial

My name is Tracy Lynch and I’m the CEO and Co-Founder, alongside my husband, of Wolfram Syndrome UK (WSUK). I started my journey with the charity when we formed it 3 weeks after our daughter’s diagnosis in March 2010. There was no support for people and families...
FOP Friends

FOP Friends

by | 25 May 2023 | Testimonial

I became a “rare leader” in 2009 when my eldest son was diagnosed with the ultra-rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Since then, as a volunteer with zero experience, I’ve setup a patient organisation, worked with researchers, pharma,...
Metabolic Support UK

Metabolic Support UK

by | 21 May 2023 | Testimonial

Metabolic Support UK (MSUK) are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of patients worldwide through providing individual support, building patient communities, and continually advocating for and empowering those living...
Alexion, AstraZeneca Rare Disease

Alexion, AstraZeneca Rare Disease

by | 10 May 2023 | Testimonial

A rare disease diagnosis can affect anyone at any time (the majority being children) and can have a significant impact on the quality of life of patients, their families, and caregivers. Alexion, AstraZeneca Rare Disease’s innovation is driven by understanding people...
Behçet’s UK

Behçet’s UK

by | 31 Jan 2023 | Testimonial

Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years. The challenge for the rare disease community is immense and can be very lonely for individuals. I’ve lost track of the number of brilliant workshops, webinar,...
MdDs

MdDs

by | 26 Jan 2023 | Testimonial

Findacure, now Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome (having MdDS embodies being in a stormy sea, when you’re not) in the UK. I was in terrible shape, physically and mentally, when...