Rare Disease Day 2016: Patient Voice

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Today is the ninth annual Rare Disease Day, an international advocacy day held on the last day of February — a rare day for rare people. Rare Disease Day 2016 recognizes the crucial role that patients play in voicing their needs and instigating change that improves their lives and the lives of their families and caregivers.

Rare Disease Day 2016


The purpose of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives. The annual campaign targets the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Rare Disease Day was first launched by the European Organization for Rare Diseases (EURORDIS) in 2008. The following year, the National Organization for Rare Disorders (NORD) partnered with EURORDIS and became the sponsor of Rare Disease Day in the United States. Partnership has expanded beyond the U.S. and Europe, and in 2015 more than 80 countries around the world participated in the event.

Making the Voice of Rare Diseases Heard

There is no single, widely accepted definition for a rare disease. In the United States, the Rare Diseases Act of 2002 defines rare disease according to prevalence, specifically “any disease or condition that affects fewer than 200,000 people in the United States”. That works out to approximately 1 in 1,500 people or less. In Europe, the European Commission on Public Health defines rare diseases as “life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.” The term low prevalence is defined as generally meaning fewer than 1 in 2,000 people. Thus, between 5,000 and 7,000 distinct rare diseases exist [1]. Most of these diseases are genetic, serious, chronic and debilitating.

This year’s Rare Disease Day slogan is “Join us in making the voice of rare diseases heard”, which appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases.

Check out the official video below and some ways you support people living with a rare disease below.

Ways to Support People Living with a Rare Disease

Did you know that rare disease effects 30 million Americans and 350 million worldwide? Here are some suggestions for how you can support someone living with a rare disease.

  1. Trust those with a rare diseases to know their needs.
    Patients who have a rare disease are typically the ones who have done the most research and know the condition best.
  2. Listen to those with a rare disease.
    Many patients and their families are isolated. It can be very difficult to have a rare disease that people don’t know very much about. Allowing patients to break that isolation is very important.
  3. Support someone with a rare disease by supporting their caregiver.
    Caregiving is often taxing — and many people living with a rare disease know that. Learn how you can help support someone’s network of care by starting a conversation around how you could possibly help alleviate pressure.
  4. Support organizations working on rare disease research.
    Most rare diseases currently don’t have treatment, and most of them have no research at all being done. Rare disease research itself is rare. With most focus and funding going to diseases that impact many people, rare disease research is considered to be a lower priority. Take the time to find reputable organizations that serves a condition you want to help address, or donate to a specific research effort through the National Organization for Rare Disorders (NORD).

References

  1. NORD’s 2012 Report to the Communities. National Organization for Rare Disorders. 2012.
About the Author

Walter Jessen is a senior writer for Highlight HEALTH Media.