Patient Stories
Your Journey, Your Story
Be part of International Thalassaemia Day by sharing your story and sending a powerful message of solidarity! Write about your experiences, challenges, and learnings from a life with thalassaemia to inspire others.

Why it matters
Discussing openly about thalassaemia fosters a stronger understanding of this condition within society, helps overcome stigma and, most importantly, empowers affected people to build resilience and advocate for positive change.
Sharing your story isn’t just about recounting events; it’s about community and solidarity. It’s about showing someone else they’re not alone on this journey.
Let your voice rise in support and unity on International Thalassaemia Day. Be someone’s strength. Be someone’s inspiration. Be someone’s reason to never give up!
Share Your Story
Where to Start
As we unite in this cause, consider these thought-provoking questions to begin crafting your story. You can post your story in English or your native language:
- What were the first thoughts that crossed your mind upon your or your loved one’s diagnosis?
- Describe a day in life with thalassaemia – its challenges as well as unexpected blessings.
- Share a moment when you found strength within yourself that you did not know existed.
- How has living with thalassaemia redefined your perspective on health, life, and community?
- In what ways do you wish society’s understanding of thalassaemia would improve?
- Describe your experiences in accessing the necessary treatments and express your aspirations for how this might evolve with the advent of new gene therapies.
- What message do you want to impart to others who are on a similar path?