<span class="translation_missing" title="translation missing: en.hdyo.land.loading">Loading</span>
Home Language What is HD? New to HD? Find Resources Research Ask for Help About HDYO News Videos Store Join Mailing List Kids Teens Young Adults Parents and Family JoHD Friends Professionals DONATE! Privacy Contact Us

Shining a Light on Rare Disease Day 2022

February 28, 2022

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


28th February 2022 marks the annual observance of Rare Disease Day - a movement aiming to raise awareness of the 300 million people around the world who are living with a rare disease.

The day was founded on February 29th, 2008 by The European Organisation for Rare Diseases, the date being chosen as a ‘rare day’ in the calendar. The cause has been observed ever since, every year on the final day of February. The campaign has grown from 8 countries participating in the movement to 106 countries in 2022 and continues to unite those affected on a global scale.

There are estimated to be over 7,000 rare diseases worldwide and those affected often face inequalities in diagnosis and treatment due to the uncommon nature of the disease. This can also lead to social stigma and discriminatory behaviour due to lack of social awareness.

Participants are encouraged to share the Rare Disease Day colors at 7pm on 28th February by lighting up local landmarks in blue, pink, green and purple, creating a chain of lights across the world. The hashtag #LightUpForRare will be promoting the event.

HDYO stand in solidarity with those affected by rare diseases as well as their families and carers. Those living with Huntington’s Disease not only share the challenges of living with a rare disease but ultimately share the drive for change in broadening the understanding and representation of the condition. Huntington’s Disease is considered a rare disease, rare being defined as unique, valuable and exceptional – the perfect definition for our amazing HDYO community!

Our Virtual Congress is a perfect opportunity to find out more about HD and our “unique and exceptional” young people impacted by it. Come and join us!

Click here to register - https://hdyocongress.vfairs.com/

Check out the following link to find out more about Rare Disease Day 2022 and to find an event near you. You can also find downloadable toolkits and printable media to help spread the word. https://www.rarediseaseday.org/

Our content is split into different groups. Choose the group that best describes your needs for more information on HD.

Kids Teens Young Adults Parents and Family JoHD Friends Professionals