Rare Disease Day® takes place on the last day of February each year to raise awareness and encourage researchers and decision makers to address the needs of those living with rare diseases.
In the US, any disease affecting fewer than 200,000 people is considered rare. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children.
In addition to the day-to-day impact of their medical hurdles, patients with rare diseases struggle to receive a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
Odylia Therapeutics is working to bring treatments to patients with rare diseases. This year, as a way to bring awareness to rare diseases and highlight Rare Disease Day, we asked Patient Groups and the patients and families they represent, “What does treatment mean to you?”
We are grateful to all the patients and families who shared their thoughts with us. They, and their persistence, inspire us.