Kudos Health are proud sponsors of rare disease charity findacure.
A rare disease is a condition that affects less than 1 in 2,000 people. Because of their rarity, these conditions are often overlooked and underfunded.
Patients can take years to get an accurate diagnosis, and only 400 of the 7,000 rare diseases have a licensed treatment. The multiple stakeholders tend to work in silos and patients can face isolation and related mental health issues.
Findacure is a small, Cambridge-based rare diseases charity. They focus on building the rare diseases community and working with it to drive research and develop treatments.
Findacure projects are split into three main areas:
Patient group training: in rare diseases, most patient groups are “kitchen-table” organisations. Findacure give them the training they need in the form of workshops, webinars, online resources and peer mentoring.
Bringing the community together: Findacure hold an annual conference, networking events and a student essay competition to raise awareness of rare diseases and bring all the multiple stakeholders together.
Drug repurposing: Findacure are working with patient groups and researchers to match existing, off-patent drugs to treat rare diseases. This is much faster, cheaper and safer than novel drug discovery, which is ideal for underfunded rare diseases.
Findacure’s work mostly takes place in the UK but, as many of the patient groups they support are international ones, it is to the benefit of patients across the world.
Similarly, any research done in their drug repurposing programme is of benefit to people everywhere in the world.
As a charitable organisation, Findacure relies on the generosity of individuals, companies, trusts, and foundations to carry out their projects.
One of the most beneficial ways you can support Findacure is by donating. Having a rare disease can be one of the most isolating, devastating, and painful experiences imaginable. Every penny Findacure raise gives them the power to change that.
"Supporting Findacure is very important to Kudos Health," said Volker Balk, Head of Kudos Health, " the team is very excited about this and already started to spread the word to clients and participants. We support Findacure with donations and plan to support with facilities and research services."
Libbie Read, Findacure Fundraising & Comms Officer, presenting at Kudos Health