Lottery funding is Beacon of hope for rare disease patients

Rare disease charity Beacon has been awarded £404,822 over three years by the National Lottery to empower those living with high unmet medical needs.

There are more than 6,000 known rare diseases, of which only half have a designated support group. Between 263 million and 446 million people are living with a rare disease worldwide.

Patient groups are a lifeline, especially for those diagnosed with a one-in-a-million gene mutation or a syndrome without a name.

Beacon, established in 2012 as Findacure, exists to upskill patient groups, so they can gain the knowledge and confidence needed to advocate on behalf of their community.

The Devonshire Road-based charity’s funding will help it to expand its empowerment programme through a combination of accessible and inclusive in-person, online and hybrid events.

And the new resources hub will expand the charity’s digital offering by providing on-demand training for patient group leaders – the hub had 50 sign-ups from patient group organisations in its first month.

Beacon CEO Rick Thompson said: “Beacon is indebted to the National Lottery Community Fund for their continued support.

“This is a hugely challenging time for rare disease patients and those that represent them – NHS waiting lists are growing, the cost of living is spiralling, and support for the charity sector is becoming harder to find.

“This funding will help Beacon develop more effective training and support for these groups, helping hundreds more small patient organisations drive change for some of the world’s most neglected conditions.”

Over the past decade, the charity has run 38 workshops with more than 1,200 attendees, 27 webinars with 1,040 attendees and six patient group mentoring programmes with 108 mentees paired with 103 mentors.

For more information see rarebeacon.org/.