February 28 is World Rare Disease Day, and we’re here this week to share our colors in support! If you or someone you love is living with a rare disease, you can easily understand how deeply challenging and isolating the experience can be. We at HTHT want you to know you are not alone. To celebrate people living with rare diseases, this week our blog is dedicated to sharing the voices of people around the world. Rare Disease Day is coordinated by EURORDIS Rare Diseases Europe and 65 National Alliances of Patient Organizations for Rare Diseases, who have collected the stories below. Click the link below each picture to find the stories of real people living with rare diseases, sharing their experiences and the true colors of their mighty spirits.
If you are unfamiliar with rare diseases, they are defined in the US as a disease that affects under 200,000 people. There are over 300 million people around the world living with rare diseases, and currently over 6,000 identified rare diseases. 72% of rare diseases are genetic, and 70% of these rare genetic diseases start in childhood. People with rare diseases often experience difficulty getting a diagnosis, a lack of treatment options, and very little information on their condition. Advancements in medical science, including gene editing technologies like CRISPR, mean that there are more options than in the past, but the battle to help every person with a rare disease is still an uphill one. We hope that shining a light on the lives and stories of people living with rare disease will help bring comfort to those afflicted and more awareness to all.
Tshepiso Gloria
Shambhavi
Vasco
Sayafik
Nada
Jelena
Nitzia
Taka
Zixuan
Wafic
For more about Rare Disease Day, more stories, and for resources to show your support on social media this week and beyond, please visit: https://www.rarediseaseday.org/