Each year on the last day of February, EURORDIS partners with organizations globally that specialize in rare diseases to celebrate Rare Disease Day. The day aims to bring attention to the more than 6,000 rare diseases that affect over 300 million people each year.
According to EURODIS, rare diseases currently affect 3.5% – 5.9% of the worldwide population. That’s over 30 million people in Europe alone but still research and quality information on the diseases are lacking and result in a delay of diagnosis. For a majority of rare diseases, there are no existing cures.
PSI works in the rare disease space regularly with trials in Hemophilia, Willebrand Disease, Paroxysmal Nocturnal Hemoglobinuria (PNH), and many more. We dedicate the work we do every day to improving the lives and treatment options for those battling against these diseases.
To show our continued support to researchers, patients, and caretakers alike, we asked our PSI team to share why promoting research in rare diseases was important to them:
Rare Disease Day might only last 24 hours but aim to provide 24 hours support to those battling against a rare disease. To learn more about rare diseases, Rare Disease Day events near you, and ways that you can get involved, visit www.rarediseaseday.org. To learn more about current research efforts, orphan drugs, and rare disease policies, visit www.eurordis.org.