Rare diseases impact report

We have a health crisis on our hands, and we're finally taking strides to make a difference. The way we are doing so: The Rare Disease Impact Report, to which I was fortunate to have had the opportunity to contribute. In the United States, rare diseases are defined as conditions affecting fewer than 200, 000 Americans at any given time. While individual rare diseases might be uncommon and disparate, the reach and impact of rare diseases is widespread:

  • There are actually 7, 000 identified rare diseases
  • 1 in 10 people in the United States are affected by a rare disease
  • The global reach of the rare disease community as a whole is 350 million people

Because these diseases are so diverse and complex, there are inherent gaps that exist in patient care and physician resources. However, now with the newly launched Rare Disease Impact Report, we have our first official documentation of the collective impact of rare diseases. The report, commissioned by Shire Human Genetic Therapies (HGT), a leading biopharmaceutical company, aims to identify and quantify the health, psycho-social and economic impact rare diseases have on patients and their families.

The findings, while not shocking to those of us who see this every day, reinforce the concerns and gaps in the rare disease space, setting us up to better address these needs. Based on survey responses from more than 1, 000 patients, caregivers, physicians and insurers in the United States and United Kingdom, the entire care journey for many patients is characterized by misdiagnosis, conflicting medical opinions and emotional stress.

The report illustrates that it takes an average of seven years for a patient with a rare disease in the United States to receive a proper diagnosis. On the journey to diagnosis, a patient typically visits up to eight different physicians and receives two to three misdiagnoses. Not surprisingly, this long journey to an accurate diagnosis is emotionally draining for patients and their loved ones. The report suggests that patients with rare diseases have an increase in stress, anxiety, worry and feelings of isolation.

The garden of health : containing the sundry rare and hidden vertues and properties of all kindes of simples and plants : together with the manner how they are to bee vsed and applyed in medicine for the health of mans body, against diuers diseases and infirmities most common amongst men
Book (Printed by Thomas Harper ...)

Strange Rare Diseases You Have to See to Believe  — Top Secret Writers
We are both curious and fearful of any new disease that we hear about. We stayed glued to the TV news if we hear of an “outbreak” of some sort. We fear as much as we investigate.

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