Imagine being one of less than 10,000 identified people worldwide with your condition.
When you tell someone you have Alpha-1 Antitrypsin Deficiency, they look at you blankly. Your friends and family try to understand but can't truly relate. Even your doctors may have limited experience. You search online and find scattered information but few real connections.
You feel alone.
With such a small identified population, AATD patients have historically faced profound isolation:
This isolation isn't just lonely—it's dangerous. It contributes to:
The Alpha1 Friend Network exists to end this isolation—forever.
The Alpha1 Friend Network is The Mark Egly Foundation's comprehensive platform and program for connecting AATD patients, families, and supporters with each other—creating a vibrant, supportive community where:
The Alpha1 Friend Network is:
The Alpha1 Friend Network transforms isolation into connection—one friendship at a time.
Peer support for chronic illness patients leads to:
"I didn't know anyone else with Alpha-1. When I connected with someone through the Friend Network who had been living with it for 20 years and was thriving—it changed everything. I stopped feeling like a victim and started seeing a future." — Michael, 42, ZZ
"The loneliest time of my life was between diagnosis and finding the Alpha1 community. Now I have friends all over the world who just 'get it.' I don't have to explain. We understand each other." — Lisa, 35, SZ
"My local support group friends have become my chosen family. They've celebrated my victories, held me through scary diagnoses, and taught me how to navigate life with AATD. I wouldn't be thriving without them." — David, 58, ZZ
"As a parent of a child with AATD, connecting with other parents saved my sanity. They taught me what I needed to know and reminded me I wasn't alone in this." — Jennifer, mother of 8-year-old with AATD
Your Hub for AATD Connection
Personal Profile
Discussion Forums
Private Messaging
Resource Library
Event Calendar
Success Stories
Ask the Community
Connecting Experienced Alphas with Newly Diagnosed
In-Person Connection in Your Area
Existing Groups:
Start a New Group:
Finding Your Tribe Within the Tribe
By Life Stage:
By Genotype:
By Treatment Status:
By Interests & Hobbies:
By Professional Identity:
By Unique Experiences:
Shared experience creates deeper understanding. While all Alphas share the common thread of AATD, specific circumstances create unique challenges and perspectives. Finding others who share your particular journey creates powerful connections.
Small Group, Deep Support
Support Circles are facilitated small groups (6-10 people) meeting regularly for deeper, more intimate support than larger community spaces provide.
The intimacy of small groups allows for:
Connection in Your Pocket (Launching 2026)
Friend Finder
Messaging & Calls
Community Feed
Support Button
Buddy System
Meetup Organizer
Resource Sharing
Emergency Info
Finding Friends Worldwide
An opt-in directory of AATD patients worldwide who are open to connecting with others in the community.
You decide what to share:
Crowdsourced Knowledge from Thousands of Patient-Years of Experience
Treatment Tips
Symptom Management
Life Hacks
Doctor & Healthcare Navigation
Insurance Battles
Emotional & Mental Health
Lifestyle Optimization
Family Screening
Workplace
Have experience to share?
Your experience could be exactly what someone else needs to hear.
Week 1: Orientation
Week 2: First Connections
Week 3: Going Deeper
Week 4: Active Participation
Month 2-3: Building Your Network
Month 4-6: Established Community Member
Year 1+: Giving Back
You've been living with AATD for years—you have so much to offer!
Ways to Engage:
Even if you've managed AATD alone for years, it's not too late to connect. The community is here whenever you're ready.
You don't have AATD, but you love someone who does. You belong here too.
Connect With:
What You'll Find:
Maria was diagnosed with AATD at 32, recently married, considering starting a family. Overwhelmed and scared, she felt like her future had vanished.
Sarah, diagnosed at 28, had been thriving with AATD for 15 years, had two healthy children, and a full life.
They were matched through the Peer Mentorship Program.
Over months of phone calls and messages, Sarah shared:
Two years later:
"Sarah gave me my future back. She showed me that AATD doesn't have to define my life. Now I'm paying it forward." — Maria
Eight strangers connected through the Alpha1 Friend Network. They lived within 30 miles of each other but had never met.
They started meeting weekly at a local coffee shop.
What happened:
"These people have become my closest friends. We laugh, we cry, we support each other through everything. Yes, AATD brought us together, but love keeps us together." — David, group member
Five years later, they still meet every Tuesday.
Six young adults with AATD from three continents connected through interest-based communities on the platform.
They created a private group chat that has been active for three years.
They've:
"These are some of my best friends, and we've never lived on the same continent. That's the magic of this community." — Alex, 29
The Mark Egly Foundation is actively building the comprehensive Alpha1 Friend Network platform with:
Phase 1: Foundation (Launched 2025)
Phase 2: Enhancement (2026)
Phase 3: Scale (2027-2028)
Phase 4: Innovation (2029+)
Currently: ~10,000 identified Alphas worldwide
Challenge: Small, dispersed population makes connection difficult
As we approach millions identified:
The more people connect, the more valuable the network becomes for everyone.
Step 1: Create Your Profile
Visit: markeglyfoundation.org/friend-network
Registration is free and takes 5 minutes
Step 2: Explore & Connect
Step 3: Engage
Step 4: Build Friendships
Step 5: Give Back (When Ready)
Violations result in warnings or removal from the community. We take safety seriously.
When you join the Alpha1 Friend Network, you join a community that:
From the moment you introduce yourself, you belong.
"For decades, I searched for answers alone. I didn't know anyone else with Alpha-1. I didn't have anyone to compare experiences with, to learn from, to lean on. That isolation made a difficult journey even harder.
The Alpha1 Friend Network ensures that no one after me has to walk this path alone. When you're diagnosed with AATD, you instantly have a community ready to embrace you, guide you, and stand with you.
This is what I wish I'd had. This is what we're building for you.
Welcome home."
— Mark Egly, Founder
Don't spend another day feeling isolated.
Thousands of people who understand exactly what you're going through are ready to connect, support, and befriend you.
Join the Alpha1 Friend Network today:
With less than 10,000 identified Alphas living, our group may be small—but our connections are mighty.
Together, we transform isolation into community, loneliness into friendship, and fear into hope.
The Alpha1 Friend Network: Because everyone needs a friend who understands.
Join us. Connect. Belong.
Your Alpha1 journey is uniquely yours—but you don't have to travel it alone.
Welcome to the Friend Network. We've been waiting for you.