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Does anyone else have ferroportin disease, AKA hemochromatosis Type 4?
Blood Cancers & Disorders | Last Active: Jun 13 2:28pm | Replies (21)Comment receiving replies
@cyj297 Hello, and thank you.
I, too, have Type 4 Hemochromatosis caused by mutations in the SLC40A1 gene.
Over time, I have gathered a considerable amount of scientific research and information about this rare condition.
If anyone is interested, I would be happy to share what I've found and exchange experiences.
https://swaresearch.blogspot.com/2025/11/hemochromatosis-understanding-iron.html
Replies to "@cyj297 Hello, and thank you. I, too, have Type 4 Hemochromatosis caused by mutations in the..."
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@swalex
Hi! Thank you so much for stepping forward and sharing this.
It is incredibly heartening to see more of us with the SLC40A1 mutation connecting here. Finding fellow patients with this exact rare condition feels like discovering a lighthouse in the dark.
Thank you for spending the time to gather all this scientific research and generously sharing your blog link. I am definitely going to dive into your compiled notes, and I am very much looking forward to exchanging experiences and learning from each other as we navigate this journey together.
Welcome to our little corner of support!