In four weeks time, the global rare disease community will join together and stand as one to highlight and bring public attention to the challenges, hopes and needs of those affected in support of Rare Disease Day 2018.
The annual awareness event, which was founded and arranged by the European Organization for Rare Diseases (EURORDIS), is now in its 10th year and takes place on the last day of February. They suggest there are over 6000 rare diseases, with an estimated 30 million people living with a rare disease in Europe and 300 million worldwide. Yet, for the majority of these diseases, there are no cures and few treatments available beyond symptomatic or palliative care [1].
This year’s theme entitled, ‘Show Your Rare, Show You Care’ considers the impact and progress of rare disease research, with the emphasis on how patient involvement, ‘needs to be taken to the next level.’ This should ensure the process and outcomes of research is truly meaningful and the knowledge gained is translated into real benefits for individuals living with rare diseases and their families.
The day will act as an international call to action for policy makers, researchers, industry and healthcare professionals to be more inclusive of people with lived experience in rare disease research.
Watch the official Rare Disease Day 2018 launch video that, ’embraces the possibilities that research can bring, a bright and hopeful future.’
How can we join in?
Haemophilia is a rare disease with only around 8,000 people diagnosed in the UK and approximately 400,000 globally (see DNAdigest Interview – Haemophilia Insights and More). Rare Disease Day is as much of an opportunity for us to show our support for the cause, as it is to wave a flag for haemophilia and other inherited bleeding disorders.
We will be joining in for the official campaign by painting our faces and sharing a selfie across our Facebook and Twitter pages – we really encourage you to do the same!
Also, please look out for our one-off feature on a rare disease advocate with a remarkable story and perspective to tell (he’s even published his own book!). We’ll be posting lots more on social media throughout the month to mark the occasion as well as how and where we’ll be celebrating on the actual day.
For more information on Rare Disease Day 2018, international events and to download a free materials pack, please click here.
Whether you’re someone living with a rare disease, their caregiver or a professional working in the field, we’d love to hear what you’re getting up to for Rare Disease Day. Please comment below or get in touch through social media. You can also email us at [email protected].
Take care,
On The Pulse Team
[1] Source: https://www.eurordis.org/news/100-days-go-get-involved-rare-disease-day-2018