Rare Disease Day 2024

Happy Rare Disease Day 2024!!!!! Show your stripes!

Following the rare disease initiative we started at the beginning of February, I wanted to share some common themes, where we need to improve, and what is being done. 

Additionally, I thought it important to share the great work that is going on to make the world a better place for people with rare diseases.

Thank you to all the amazing individuals, and families who entrusted me to share their stories with the world. Thank you to Chris Hendriksz (A Rare Cause) for his enlightening summary of the recent RareX conference that took place in South Africa. Thanks also to Emma at Medics 4 Rare Diseases for sharing a summary of their work training the current and future generations of medics on rare diseases.

Nngwe - One Life Matters

Changing Places UK

hashtag#raredisease hashtag#advocacymatters 

Rare Disease Day summary.docx

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