Results for "light up for rare"
The rare disease community and its supporters come together to share the message: Rare is many. Rare is strong. Rare is proud! Today, 28 February,… Continue reading Many, Strong, Proud: Connecting Rare Disease Day Across Continents
The stigma around Rare children’s is that, they are a burden to the society and healthcare system. So, is it worth investing in rare disease… Continue reading Invest in RARE, Invest for FUTURE
The official Rare Disease Day 2021 video launches today and is already available in 36 languages, kicking off the international patient-led movement that puts rare diseases… Continue reading Out Now! Rare Disease Day 2021 video is here!
My name is Sharifa, a mother to two rare diseases affected children, Nasreen and Ali. Nasreen is no more. She has joined the other side… Continue reading We may be rare in isolation, but not in collective experience.
A COFFEE CONVERSATION WITH MY RARE AILMENT A Rare Ailment (RA) is identified, that affects fewer people across a broad range of possible disorders. Can… Continue reading A COFFEE CONVERSATION WITH MY RARE AILMENT
Do you know the meaning for rare is “extraordinary.” Yeah, I’m rare, but I’m also extraordinary. My name is Nabila, female, age 35, with parahemophilia… Continue reading Invisibly Rare
If you have a rare disease, the search for a diagnosis can often feel like the longest detective investigation – with no clues, lots of… Continue reading Long diagnosis, misdiagnosis, or no diagnosis – how rare diseases go under the radar