I lost my voice due to a an extremely painful Rare Disease called Eagle Syndrome from one day to the next for years. It has… Continue reading Losing my voice and speaking up
Results for "light up for rare"
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Hi, I’m Kim from Manipur, India. Growing up I was sensitive to sunlight and camera flash light. At the same time I had quite low… Continue reading Rare disease chose me but I choose Living Hope
Today, 28 February 2022, is Rare Disease Day; the day dedicated to raising awareness for the 300 million people living with a rare disease around… Continue reading Press Release: Share Your Colours for Rare Disease Day
On 28 February 2022, the rare disease community is coming together for Rare Disease Day to spread hope and solidarity across the world with a… Continue reading Join the Global Chain of Lights!
Aisha was born on the RDD 2019 at 1111hrs in Islamabad, the capital of Pakistan. Owing to her mother’s unstable condition, she was born slightly… Continue reading Born on Rare Disease Day with a Rarest of disease mutation; Rare amongst the ‘many Rare’
Rare conditions can affect anyone, at anytime, anywhere. Geographic location, economic status, education, and gender. None of these things precludes any global citizen from being… Continue reading Illumination of Rare
We are a not for profit organisation with a vision to deliver innovative support to nurses and other healthcare professionals involved in rare conditions, so… Continue reading Rare Disease Nurse Network
CONNECTING THE WORLDWIDE RARE DISEASE COMMUNITY WITH 100 DAYS TO RARE DISEASE DAY 20 November 2021, Paris Today marks the launch of the global awareness… Continue reading Press Release: 100 Days to Rare Disease Day 2022
