[[whitepaper]] Orphan Diseases, Bringing the Trial to the Patient

In Orphan Drug Congress, Uncategorized, Whitepapers by Karina Kusova

A True Focus on Patient Centricity

Whitepaper written by: Peter Allan and Helen Springford
Provided by: Illingworth Research Group

An orphan disease may be a rare disease presenting within a small population or can also include conditions that are not receiving adequate attention from the pharmaceutical industry, perhaps due to the geographical spread, such as in developing nations. Orphan diseases have a strict legal definition in many countries in order to encourage research in these areas. The US Food and Drug Administration (FDA) defines orphan drugs as those intended to treat rare diseases/ disorders that affect fewer than 200,000 people in the U.S., or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug.

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The struggle people go through with orphan illnesses to find the right consultant, to undergo the correct assessments, to be given an accurate diagnosis and crucially receive effective treatment is well documented. Living with an orphan disease is often tortuous with many likely to suffer from depression, anxiety, worry about lack of information and future outlook of their disease, as well as reporting feelings of isolation.

Many of the people living with rare diseases are desperate to do something to influence their illness. Their eagerness to influence their illness can potentially lead them to take greater risks surrounding their treatment. This may also include a lack of proper consideration as to whether as to whether participation in a particular clinical trial is really suitable.

Download whitepaper for insight into:

  • Could more be done to improve the lives of orphan disease patients?
  • Why isn’t mobile research nursing more common?
  • Customer testimonials

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Illingworth Research is a sponsor of the upcoming World Orphan Drug Congress USA 2017 being held April 19-21,2017 at the Washington Marriott Wardman Park in Washington D.C.Register now to attend. Make sure to visit Illingworth Research at booth #308 at World Orphan Drug Congress.