“For example, people affected by rare diseases such as chronic myeloid leukemia or Cushing’s disease can feel alone, and share the burdens of minimal treatment options.”īreakthrough research has sometimes put a more public face on rare diseases, such as chronic myeloid leukemia (CML), a cancer of the blood and bone marrow characterized by the presence of an abnormality called the Philadelphia (Ph) chromosome. “Our organization understands the importance of Rare Disease Day and aims to provide a voice for patients and families to bring to light the need for continued development of new treatments,” says Mary Dunkle, Vice President for Communications, National Organization for Rare Disorders (NORD). are defined as rare, when considered together they impact nearly 30 million Americans or almost one in 10 people, according to the National Institutes of Health. While individually, each of these approximately 6,800 such diseases in the U.S. 28, with local events held across the globe to help build community support and awareness.īy definition, a rare disease is an illness that affects fewer than 200,000 people in the U.S. This year, disease education activities will take place Feb. The goal of Rare Disease Day is to provide awareness of lesser known diseases, and to recognize each respective patient community while highlighting the great strides that are being made in medical research. Yet for people living with rare diseases and their loved ones, the path to a confirmed diagnosis, adapting to new treatment regimens, and facing the day-to-day challenges of these diseases can often be overwhelming. Unlike more common conditions such as diabetes and breast cancer, many of these diseases, as well as the people affected by them, are not recognized by their own awareness initiatives throughout the year. (BPT) – Each year, people across the world are invited to join together to raise awareness about rare diseases. Igniting the conversation about rare diseases

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