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How to Fight Rare Disease

Working on the Rare Disease Science Challenge has shown me that everybody wants to support rare disease in many different ways, which is how the competition ended up having 21 donating vendors and 6 media partners. These groups were looking for a viable outlet and a high enough level of organization to ensure that getting involved meant making a difference. Oftentimes, the opportunity to help just never came up and so the Rare Disease Challenge was a no-brainer.

Most people would like to join the fight against rare disease but do not have the resources of a company. Our partner for the competition, Rare Genomics Institute, has created an infographic visualizing the incredible growth in rare disease research in the past 30 years and how to anyone can contribute. There are 7000+ rare diseases, each with its own set of causes and symptoms, that can’t get the support that mainstream diseases can get. Rare disease affects 1 in 10 Americans, so you may know someone right now and will likely run into many over your lifetime.

How to get involved:

  • Tell your friends - letting people know about a specific disorder or the plight of all rare diseases patients helps raise awareness and eventually greater support (moral and/or financial)
  • Support science - stay abreast of new developments, vote in favor of scientific funding, or write to legislators
  • Help out patients - donate to a rare disease advocacy group or hug any friends that may be afflicted.
  • Try something new - hold an event to raise money and awareness, become an active member in the community, or try to help out in events like the Rare Disease Challenge!