Hi, I’m Eric — the founder of Awareness4Rare.org. I never thought I’d be here, writing blogs about rare diseases or advocating for patients and caregivers like you and me. But when rare hits home, everything changes.

My life pivoted when my beautiful niece was diagnosed with KMT2B at just 2 years old, and not long after, my mother was confirmed to have Addison’s disease. These two incredible women — one just beginning life and the other who gave me life — are the heartbeat behind this entire site.

This platform exists because of them. Their diagnoses rocked our family, and like many of you, we were met with a sea of confusion, misdiagnoses, outdated info, and not nearly enough support.

Why I Started Awareness4Rare

In our darkest moments, I realized something: there wasn’t enough real information out there. I found bits and pieces of hope scattered across forums, medical journals, and caregiver support groups — but nothing centralized, nothing easy to understand, and definitely nothing that spoke from the perspective of someone actually living it.

So, I started writing. I’m also a published book author — my first book on Addison’s disease is already available on Amazon, and I’m currently working on dedicated books for both Addison’s and KMT2B. You can check out my Author Page on Amazon to learn more.

This site has over 100 hours of research invested into creating a meaningful hub of rare disease information and support. While I personally research, take notes, and write every post myself, I do use AI tools behind the scenes to help organize my drafts, verify facts, and structure content in a more reader-friendly way. If I’m struggling to locate sources or dig into complex medical topics, AI can assist with advanced searches — especially for those hard-to-find answers families like ours desperately need.

I want to be transparent about that. AI doesn’t write these stories — I do — but it’s a tool I lean on to refine and support what I bring to the table. Hopefully, this balance earns your trust and delivers the clarity and accuracy you deserve.

Important Note: I am not a doctor or healthcare provider. Nothing on Awareness4Rare.org is intended to diagnose, treat, cure, or rule out any medical condition. This site is for informational and support purposes only, based on our family’s personal experiences and the research we’ve done. If you believe something may be wrong with your health or your child’s health, we strongly encourage you to speak with a licensed medical professional. Always consult your healthcare provider for personalized guidance.

What’s Coming Next for This Site

Awareness4Rare.org isn’t just a blog. It’s a community. I’m working on integrating AI into the site to help you find reliable answers to medical questions our current articles may not cover yet. It’s about time families had access to smarter, simpler ways to find the answers they need.

More importantly, I want your stories. Whether you’re a:

• Patient battling a rare condition
• Family member adjusting to a new diagnosis
• Caregiver walking through the unknown every day
• Researcher or doctor with breakthroughs to share

We want to hear from you.

You can write a blog that we’ll post here, or submit a well-detailed summary including facts, sources, and what you’ve learned on your journey. Your story matters — and it could help someone else who’s struggling in silence.

If you’re interested, visit our Contact Page to reach out. I’ll personally review each submission.

This Site Is Free — But Help Is Always Welcome

Everything here is 100% free to use. No subscriptions, no paywalls, no logins. Just pure support and information. That said, keeping the site running does come with costs. If you find value in what we do, donations are appreciated — but never required.

And most importantly, please share your story and your findings with us. One post, one fact, one moment of vulnerability could change a life.

“You are not alone. Together, we are stronger — one voice, one story, one rare fight at a time.”

Call to Action:

Have a story to share? Advice for others? Discovered new resources or sites? Click here to contact us — your story may help someone else today.

Author Bio: I’m Eric, a caregiver for my mom (an Addison’s warrior) and uncle to a beautiful 2-year-old niece diagnosed with KMT2B. I started Awareness4Rare to share the rare information I’ve found while fighting for my loved ones. If my words help even one person get a diagnosis faster or live a better life, this mission is worth every second.

Full Copy-Pasteable Link List of References: https://amazon.com/author/eglas https://Awareness4Rare.org/contact