Rare Disease Day 2019
Rare Disease Day falls on the last day of February every year. The day is an opportunity for patients and advocacy groups to campaign and raise awareness about rare diseases, such as aspergillosis. 1 in 20 people will live with a rare disease at some point in their lifetime, yet there are still huge challenges faced by those who do. Common problems include delays in diagnosis and difficulties accessing treatment and care – these problems may sound all too familiar to many aspergillosis patients. Click here to find out more about Rare Disease Day, and how you can get involved!
The Aspergillosis Trust is taking part in Rare Disease Day on social media. You can read other patients’ rare disease stories and share your own here to take part in Rare Disease Day. You can also read other aspergillosis patients’ stories on the Aspergillosis Trust website.
The Aspergillosis Trust have also added their logo (along with 90+ other patient organisations) to the open letter to the government asking for a review of the UK Rare Disease Strategy before 2020. You can read this letter here.