Case studies and testimonials
Read our case studies and testimonials to see what we can accomplish together!
Our patient group trainings, rare community projects and drug repurposing initiatives transcend sectors and borders. We’ve helped countless rare disease patient groups reach their advocacy goals and overcome diverse challenges. We’ve collaborated with stakeholders to improve the rare disease landscape for the benefit of all rare conditions. We are ensuring that no one faces their rare journey alone.
Don’t just take our word for it, though!
Read our case studies and testimonials to hear what our patient groups and collaborators have to say about our work. Our beneficiaries and collaborators know us best. Their achievements are our achievements. We help each other to succeed so that we can shine one, collective light on rare disease. Together, the rare community is stronger than the sum of its parts.
Case studies
Meet Kristie, CEO of Global DARE Foundation
Defeat Adult Refsum EverywhereKristie was catapulted into the world of rare diseases in April 2019...
Meet Amanda, Trustee and Chair of The EOS Network
Amanda has double the inspiration for establishing The EOS Network. Amanda’s two children, Samuel...
Meet Bhavna, CEO of Stargardt’s Connected
Bhavna’s world changed forever in September 2015 when her seven-year-old son, Ethan, was diagnosed...
Meet Allison, co-founder of Ring 20 Research and Support UK
As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for...
Meet Wendy, Chair of the Norrie Disease Foundation
When Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness,...
Meet Russell, Trustee of the LHON Society
Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare...
Testimonials
Castleman Disease Collaborative Network
Patient groups like Beacon provide critical information and resources to help the rare disease...
Pitt Hopkins UK
I found out about Findacure (now Beacon) by chance back in 2014. There was going to be a workshop...
Wolfram Syndrome UK
My name is Tracy Lynch and I’m the CEO and Co-Founder, alongside my husband, of Wolfram Syndrome...
FOP Friends
I became a “rare leader” in 2009 when my eldest son was diagnosed with the ultra-rare genetic...
Metabolic Support UK
Metabolic Support UK (MSUK) are the leading organisation for Inherited Metabolic Disorders (IMDs),...
Alexion, AstraZeneca Rare Disease
A rare disease diagnosis can affect anyone at any time (the majority being children) and can have...
Behçet’s UK
Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past...
MdDs
Findacure, now Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating...
If you’d like a case study of your organisation featured on our website, or wish to provide a testimonial, get in touch with our team today!