Rare definition: adjective, seldom occurring or found. When considering that there are less than 200 individuals world-wide that have been medically diagnosed with TANGO2 disease, it might feel like we accurately fall within this definition.
However, TANGO2 disease is one among 7,000 rare diseases globally. In fact, over 300 million people are impacted by rare disease globally. This equates to one on every elevator and four on every bus.
Suddenly, rare disease doesn’t seem quite rare. While individual diseases may be rare, the total number of people with a rare disease is large.
Many—but not all—rare diseases are genetic. Some are apparent at birth while others do not appear until much later in life. Approximately two-thirds of individuals with rare diseases are children. We are all connected to someone who has a rare disease. Rare diseases are an important public health concern.
Although it can certainly feel like it, rare disease families are not alone. There is a global community of individuals on this journey. To bring awareness to this community, and work towards access to diagnosis and therapies for people living with a rare disease, we support and recognize February 28th as Rare Disease Day and February as Rare Disease Month. Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States.
Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. Of the 7,000 known rare diseases, approximately 95 percent have no treatment. This is why it is so important to focus public attention on rare diseases as a public health concern. The more we can educate and build awareness, the more we can make great strides to find treatments and cures.
In fact, our organization has been highlighting stories of TANGO2 disease by featuring a child or young adult every day. Please visit our Facebook page to read this incredible stories.
If these facts and information have called you to get involved in Rare Disease Day, please join us on Saturday, February 26th at 11:00 AM for our Shine a Light on TANGO2 kickoff event (Zoom ID: 84373323190) Meet our families and learn more about how you can help make a difference in the lives of children and young adults living with TANGO2 disease.
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