Rare disease patients can face an uphill battle when it comes to diagnosis and treatment. According to Rare Disease UK’s 2015 report ‘The Rare Reality’, the average rare disease patient consults with five doctors, receives three misdiagnoses, and waits four years before receiving their final diagnosis. Even after this ‘diagnostic odyssey’, patients can struggle to get appropriate treatment and care. A key reason behind this is the lack of awareness of rare diseases amongst most healthcare professionals (HCPs).

As a result, it is important patient groups raise awareness about their conditions among HCPs, to reduce the health (as well as emotional and mental) implications of this ‘odyssey’. We decided to tackle this topic in our latest ‘Explained’ webinar on the 14th February. What better way to celebrate Valentine’s Day?

Our first speaker was Lesley Harrison, Patient Support Manager at the AKU Society. Lesley started with an excellent quote from the Journal of Cardiovascular Diseases, which summarised the issue most rare diseases face: “Healthcare workers often have insufficient knowledge on rare diseases that may lead to delay in making a diagnosis and providing appropriate care.” Due to this, the AKU Society have undergone four main activities to raise awareness and educate medical professionals: attending conferences, direct messaging GPs, creating an e-learning module, and partnering with external organisations. A key insight from their activities is to offer a ‘carrot’ to professionals when trying to raise awareness, such as getting educational materials CPD accredited so there is a personal benefit for participating.

Our second speaker was then David Head, Chief Executive at The Haemochromatosis Society. Haemochromatosis is a little known but actually common condition, which suffers from misdiagnosis and significantly delayed diagnosis. The Haemochromatosis Society decided to target their approach into three activities to raise awareness to improve patient outcomes: creating a resource for pharmacists, running a CPD accredited conference, and creating hospital packs. David stressed that patient groups should avoid a scattergun approach, and instead identify the key individuals involved in diagnosis (in their case, predominantly pharmacists) to directly target with information. In addition, David emphasised the need to build credibility for your patient group and use social media to create an image of being much larger than you actually are. This makes it more likely external organisations will be willing to partner and support initiatives.

If you would like to watch the webinar, the recording is available here: https://youtu.be/6kkOotmdREk

We would like to thank our lovely speakers, our sponsor Comradis, and our attendees for making this an excellent webinar! If you would like to join a future webinar, you can find a list of all upcoming ones here: http://www.findacure.org.uk/webinars/