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RARE DISEASE DAY 2021

Those who browse this site will likely know that most diseases which cause periodic fevers are known as rare. But for some, this may be the first time they have encountered rare diseases.

In Europe, any disease that affects fewer than 1 in 2,000 people is classified as a rare disease. There are over 6,000 recognized rare diseases – some, like HIDS, only affect a few hundred of people worldwide. However, altogether over 300 million people and their families are impacted by a rare disease globally.1,2

Not only is there is a huge diversity of disorders and symptoms from disease to disease, but the experiences of those affected by the same condition can vary greatly. Because of the rarity of these diseases and often the differing manifestations experienced, diagnosis can be difficult, and misdiagnosis is unfortunately common.

To bring more recognition and awareness to this issue, Rare Diseases Europe (EURORDIS) organized the first Rare Disease Day in 2008, a day focused on spreading awareness about rare diseases and their impact on the lives of those with rate diseases. This year, Rare Disease Day is taking place on the 28th February. People with rare diseases, their families, patient groups and organizations around the world will be calling to “Reframe Rare,” a message that reframes perceptions of what it means to be “rare” through events and awareness activities.

We look forward to sharing more information with you on these events above and sharing information on living with periodic fevers over the coming weeks and months.

But in the meantime, as the mantra of Rare Disease Day goes: “Rare is many, rare is strong and rare is proud” and together, we will work with you and for you to help improve the lives of all living with a rare disease.

References:

  1. Rare Disease Day 2021 information pack. EURORDIS Rare Disease Day Website. https://download2.rarediseaseday.org/2021/infopack2021.pdf. Accessed on February 2021
  2. Nguengang Wakap S et al. 2019. European Journal of Human Genetics, 28, pages 165–173(2020)
Learn more about HIDS (hyperimmunoglobuiln D Syndrome)

HIDS is a rare auto inflammatory disease, and one of the periodic fever syndromes that presents in early childhood.

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Periodic Fevers

December 2015 - GLDEIM/ACZ885/0044