Read our case studies to see what we can accomplish together!
Read our case studies 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.
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 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 hereditary condition.
Meet Bhavna, CEO of Stargardt’s Connected
Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.
Meet Wendy, Chair of the Norrie Disease Foundation
Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.
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 a patient group that would provide support and advice to help families and patients cope with the condition.
Meet Amanda, Trustee and Chair of The EOS Network
Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.
Testimonials
See what our patient group leaders and partners have to say about Beacon and our work.
Alexion, AstraZeneca Rare Disease testimonial
“We believe that Beacon, as an umbrella organization, helps bring the rare disease community together…”
Ataxia and Me testimonial
“It has been fantastic to be in this rare disease family knowing you are not alone in this rare disease community.”
Metabolic Support UK testimonial
“As we elevate our individual support, empowerment, advocacy, and insight offers, we hope to partner with Beacon on future campaigns…”
Castleman Disease Collaborative Network testimonial
“Patient groups like Beacon provide critical information and resources to help the rare disease community get closer to treatments for devastating illnesses.”
MdDS Information and Help testimonial
“Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome in the UK”
Pitt Hopkins UK testimonial
“There has been advice about how to become a charity, how to fundraise, how to work with researchers. They think of everything!”
Wolfram Syndrome UK testimonial
“Beacon have been there helping me to connect with other Rare Disease Charity communities…”
Behçet’s UK testimonial
“Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years.”
FOP Friends testimonial
Beacon’s programmes, trainings, webinars, support, student voice prize, connections, and of course RareChat sessions, have all been fantastic.
If you’d like a case study of your organisation featured on our website, please email our Marketing and Engagement Manager, Blayne. Get in touch today!
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 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 hereditary condition.
Meet Bhavna, CEO of Stargardt’s Connected
Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.
Meet Wendy, Chair of the Norrie Disease Foundation
Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.
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 a patient group that would provide support and advice to help families and patients cope with the condition.
Meet Amanda, Trustee and Chair of The EOS Network
Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.
Testimonials
See what our patient group leaders and partners have to say about Beacon and our work.
Alexion, AstraZeneca Rare Disease testimonial
“We believe that Beacon, as an umbrella organization, helps bring the rare disease community together…”
Ataxia and Me testimonial
“It has been fantastic to be in this rare disease family knowing you are not alone in this rare disease community.”
Metabolic Support UK testimonial
“As we elevate our individual support, empowerment, advocacy, and insight offers, we hope to partner with Beacon on future campaigns…”
Castleman Disease Collaborative Network testimonial
“Patient groups like Beacon provide critical information and resources to help the rare disease community get closer to treatments for devastating illnesses.”
MdDS Information and Help testimonial
“Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome in the UK”
Pitt Hopkins UK testimonial
“There has been advice about how to become a charity, how to fundraise, how to work with researchers. They think of everything!”
Wolfram Syndrome UK testimonial
“Beacon have been there helping me to connect with other Rare Disease Charity communities…”
Behçet’s UK testimonial
“Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years.”
FOP Friends testimonial
Beacon’s programmes, trainings, webinars, support, student voice prize, connections, and of course RareChat sessions, have all been fantastic.
If you’d like a case study of your organisation featured on our website, please email our Marketing and Engagement Manager, Blayne. Get in touch today!