Tuesday 31 January is the International Day of the Zebra. We want to use this day as a way to highlight the rare disease community and all that we are doing to make more people aware of both Huntington's disease and the wider rare disease community.

“When you hear the sound of hooves, think horses, not zebras.”

The above phrase is taught to medical students throughout their training and is based on the quote from Dr. Theodore Woodward who said, “When you hear hoofbeats behind you, don't expect to see a zebra.”

In medicine, the zebra was chosen to represent a rare disease. Doctors are taught to expect less common conditions in order to avoid patients being misdiagnosed with rare illnesses. Because of this being implemented during training, many medical professionals don't learn enough about rare diseases and can often forget how common a rare disease is. In fact, there are over 300 million people in the world currently living with a rare disease.

This year, we are hearing the phrase "year of the zebra" in the rare disease community. This is because it marks 40 years since the Orphan Drug Act of 1983 was passed in the United States. An orphan drug is a drug developed for certain rare conditions but would not be profitable to produce without government support. Although this law only applies in the United States, any drug developed under the act would be available for the Huntington's community in other countries.

"The Orphan Drug Act facilitates the development of orphan drugs—drugs for rare diseases such as Huntington's disease, myoclonus, ALS, Tourette syndrome and muscular dystrophy."

Medical professionals 

We are working hard to build connections and educate the medical community about Huntington's disease. Connecting with charities such as Medics4 Rare Diseases where the sole focus is to educate medical professionals and those in training about rare diseases and their common misconceptions.

How can you get involved?

We would like to invite you to join us for Rare Disease Day 2023. This day is to bring the communities from the 6,000 rare diseases that are currently diagnosed together. #RareDiseaseDay takes place on Tuesday 28 February and they are welcoming stories from people with rare diseases across the world. Visit their website to find out how you can take part.

We will continue to raise awareness through our campaigning and training so that more people understand Huntington's disease and we can get better care for our community.