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Tuesday, February 28, 2017
Rare Disease Day
The last day of February has been designated as Rare Disease Day. It is mean to call attention to the public health issues associated with rare diseases. Nearly 30 million Americans and countless others around the world suffer with rare diseases.
Rare diseases are often complex. Those suffering with rare disease often have limited treatment and services available to them. Family members are often the source of support, solidarity, and care for the loved one suffering. Patients should never be afraid to voice their needs. Knowing what is needed by the patients own voice will hopefully change the improves their lives and the lives of their families and caregivers.
A rare disease or disorder affects fewer than 1 in 2000 in Europe or affects fewer than 200,000 Americans at any given time. Around 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral) allergies and environmental causes or are degenerative and pro-life. About 50% of rare diseases affect children.
Rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but patient to patient suffering from the same disease. Common symptoms can mask rare diseases leading to misdiagnosis and delaying treatment. When this happens the patients quality of life is affected by the lack or loss of autonomy due to chronic, progressive, degenrative and frequently life threatening aspects of the disease.
Rare diseases has the adversity of scientist not having a lot of knowledge or quality information on the disease. Delays of diagnosis are often present with heavy social and financial burdens on patients.
Rare disease patients and their families face many challenges, enormous progress is being made every day. Rare diseases have helped lead to better public health policies. Rare Disease Day is a great example of how progress continues to be made, with events being held worldwide each year. The first year of Rare Disease Day was in 2008. In 2008 only 18 countries were involved since that time more then 75 countries have become involved. There is much progress still to be made