A Support Community for Addison’s, KMT2B, and Rare Disease Families
Real stories. Trusted resources. Hope for those navigating the unknown.Hours of Research Behind This Support Hub
When someone you love is facing a rare disease, the hardest part is often the not knowing — not knowing the name, the symptoms, the treatments, or what comes next. Whether you’re battling undiagnosed symptoms or navigating a diagnosis like Addison’s disease or KMT2B syndrome, this hub was built to help you feel less alone. Here, you’ll find real experiences, AI-assisted insights, early warning signs, and connections to others who live with these rare conditions every day. This is not just a blog — it’s a place of hope, healing, and shared strength
7000+
Known Rare Diseases Worldwide
2
Close Family Members Personally Affected
100+
Hours of Research Behind This Support Hub
About Me
Living Through Rare — and Sharing What I’ve Learned
Watching my mom suffer for over five years without a diagnosis was one of the hardest things I’ve ever experienced. She fought silently, day after day, while doctors searched for answers they just couldn’t find. When we finally learned she had Addison’s disease, it was both a relief and the start of a whole new battle — one we’re still fighting every day.
Then came another unexpected turn: my two-year-old niece, so innocent and full of light, was diagnosed with an incredibly rare genetic mutation called KMT2B. With only 80 to 90 known cases worldwide, it felt like we had been pulled into a medical world that few people understood — and even fewer could help with.
I’m not a doctor. I don’t pretend to be one. What I am is a son, a caregiver, and an uncle who has lived these battles right alongside the people I love most. I know the fear of not knowing what’s next. I carry the stress, the memories, and the moments of hope — and heartbreak — that come with rare diseases.
That’s why I started this free support hub. I’ve spent countless hours researching, reading, digging for facts and insights that could help my family — and now, I want to share everything I’ve found in hopes it might help someone else.
Here, you’ll find:
Personal stories from my life with Addison’s and KMT2B
Rare information I’ve uncovered through deep research
Helpful articles, resources, and early warning signs
And AddiAi, a free AI tool I built to help you find answers faster
Yes, I use AI to help write and structure my posts. I write the raw version myself — straight from experience — and then I use AI to clean it up so it’s easier to read. I also use AI to help me locate hard-to-find, reputable sources when I hit a wall. But remember: AI is not perfect, and it’s not a doctor either. Always talk to a licensed medical professionalbefore making decisions about your health.
This site isn’t a business. I don’t charge for anything — not even the AI tool. This is my way of giving back. If even one person finds clarity, peace, or a faster diagnosis because of something I’ve written, then every second of this has been worth it.
Strength, Faith, and Hope in the Face of Rare Disease
Every day, our family fights battles most people have never heard of — and we do it with courage, belief, and unshakable love.
We Stay Strong
Even when the days are long, and the answers don’t come easy — we fight, and we don’t give up.
We Hold on to Faith
In every setback, we find strength. In every unknown, we trust that brighter days are ahead.
We Never Lose Hope
For better treatments, for breakthroughs, for a cure — and for others who are just starting this journey.
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