As the mornings get frostier and the nights set in even earlier, it’s clear we’re approaching a very special time of year: Christmas!
But Christmas can also be a very tough time for people who live with a rare disease. Only 400 of the 7,000 known rare diseases have a treatment licensed for use in the UK, leaving some patients having to cope with extreme pain, and others dealing with the side-effects of ‘trial-and-error’ medication. As a result, some will be unable to travel to see their family, whilst others might have to spend the day in hospital. If you could ask any one of these patients what they’d want most for Christmas, it would almost certainly be an effective therapy for their condition, so they can live a healthy life.
Findacure are here to make this hope become a reality. We work with small, and often struggling, rare disease patient groups to help them provide better support to their patients, fund research into new treatments, and guide their patients through the research process.
We are also running our own research project called the Rare Disease Drug Repurposing Social Impact Bond, or RDDR SIB for short. Drug repurposing is like recycling. It takes existing generic drugs, approved for human use, and identifies new illnesses that they could treat. Because researchers already know a lot about the drug and how it works, this bypasses the extortionate cost of conventional drug discovery – ideal for underfunded rare diseases! But because the drug cannot be patented, this method doesn’t generate much interest within the pharmaceutical industry. Instead, we are going to take it up and provide a funding mechanism known as a ‘social impact bond’. You can find out more about this in Our Work.
This is the world’s first project of its kind. We are treading on unchartered territory – but we want to make leaps and bounds! Funding is the main factor currently holding us back, and ultimately, halting the delivery of treatments to patients who are in desperate need.
Our plans for 2017 are as ambitious as ever. But we can only make them happen with your help. We are asking all our supporters, new and old, to donate just £12 to support the following 12 projects over 12 months of 2017. We will, of course, gratefully accept gifts of any size.
To get involved in our ‘12 Donations of Christmas’ campaign, simply visit www.virginmoneygiving.com/fund/12donations to donate online. Leave your name and address and we’ll send you a thank you card in the post!