Latest Posts
The Global Rare Disease Research Symposium!
Light is best seen in the dark a neuromyelitis optica spectrum story
By Jejaira Siwela (ZIMSA) He opened his eyes once more, or at least he thought they were open, but, he[…]
Read moreWorld Health Assembly Side Event: Towards a WHA Resolution on Rare Diseases in 2025
RDI is advocating for World Health Assembly resolution on rare diseases in 2025. This campaign aims to underline the critical[…]
Read moreUnderstanding Trisomy 13!
Trisomy 13, also known as Patau syndrome, is a genetic disorder that occurs when a baby has an extra copy[…]
Read moreLet’s talk about Hirschsprung: Shining a Light on a Rare Condition
Let’s talk about Hirschsprung: Shining a Light on a Rare Condition It’s 7 days to #RareDiseaseDay! Today we bring awareness[…]
Read moreShining a Light on Spinal Muscular Atrophy
Spinal muscular atrophy (SMA) is a rare genetic disease that weakens muscles, making even basic activities like walking or breathing[…]
Read moreA Warrior’s Tale: Unveiling the Strength Within
Imagine a world where every breath is a struggle, every movement a hurdle, and the simplest tasks require unwavering determination.[…]
Read moreMeet Rungamai: A Two-Year-Old Brimming with Sunshine!
Rungamai is an adorable and beautiful 2-year-old with a unique journey. She was born with holoprosencephaly, a condition that affects[…]
Read moreRARE DISEASE DAY
With 44 days to go to Rare disease day we call for action for people living with a rare disease[…]
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