Rare Disease Day is the one-of-its-kind international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.
This year marks the 7th annual observance of Rare Disease Day U.S. The Rare Disease Day 2015 theme, Living with a Rare Disease, pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.
Rare Disease Day is open to everyone. Individuals, patients, patient organizations, health professionals, researchers, drug developers, public health authorities – the more people involved the better! There are many ways to participate. Together, we can transform the individual experience of patients and relatives around the world into collective actions, support, advocacy and community building.
In the U.S., any disease affecting fewer than 200,000 people is considered rare. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
Many people with rare diseases can say that access to care involves not just one person, but a team. This year on Rare Disease Day 2015, we celebrate all who come together to support the rare disease community. From the doctors at a center of excellence, to the home health nurses who provide care on a daily basis, this year is about the unsung heroes who commit themselves to a community that might otherwise not get the attention it deserves. As we celebrate, we also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community. Every patient story is different and so is every need. Some patients have less extensive diseases while for others, managing their care is a full-time job. We as a community work toward the goal that no patient should go without, no matter how rare or involved their condition may be. For every patient advocate taking a stand, every parent looking tirelessly for a doctor, every case manager fighting an insurance battle, this day is for you. That is why this year’s international theme is, “Living with a Rare Disease.”
- Information taken from http://rarediseaseday.us – see more ways to participate there.