by AKU | Jun 3, 2015 | Uncategorized
Roll up roll up, because today we launch our spectacular raffle! In today’s blog find out why we are doing the raffle, what prizes are up for grabs, and how you can buy and sell tickets. An International Patient WorkshopDue to its rarity, it’s often difficult to get...
by AKU | May 27, 2015 | Uncategorized
We’ve got some free charity spaces up for grabs for the upcoming Spartan races this year. But what is the Spartan race, and what makes it different from your standard charity run? In this week’s blog we explain the challenge, and ask you if you are up for it. The...
by AKU | May 13, 2015 | Uncategorized
At the end of April, Nick was in the USA attending the World Orphan Drug Congress. In today’s blog he tells us why he attended the event, and what he learnt from his time there. I’m just back from the World Orphan Drug Congress USA in Washington DC, where I...
by AKU | May 6, 2015 | Uncategorized
So far as a charity our biggest community fundraising projects have taken the form of crowdfunding campaigns. Aside from these, grant applications have been our main source of funding, alongside the occasional sponsored event organised by our dedicated supporters. We...
by AKU | Apr 29, 2015 | Uncategorized
In mid-April, Eve attended the Specialised Healthcare Commissioning Alliance (SHCA) meeting in London. The alliance, formed of patient-related groups and corporate members, meet quarterly to campaign on behalf of people with rare and complex conditions in need of...
