Advocacy Ambassador: The Mentorship Matching Program

Because no one with EDS should have to navigate it alone.

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Welcome to the Connective Club

The journey through Ehlers-Danlos Syndrome (EDS) can feel isolating, confusing, and overwhelming—especially when you’re newly diagnosed or just discovering that your symptoms have a name.

That’s why we created the Ambassador Advocacy Mentorship Matching Program: a community-powered support network that connects experienced EDS patients (Ambassadors) with those who are newer to the diagnosis (Mentees), to walk alongside each other with guidance, lived wisdom, and validation.

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What Is the Ambassador Mentorship Program?

It’s not therapy.
It’s not coaching.
It’s peer-to-peer connection.

We match you based on your interests, diagnosis journey, lifestyle, and availability. Whether you’re just starting to explore what hEDS means for your life or you’re a veteran zebra with wisdom to share, there’s a place for you here.

We Offer:

• 1:1 matching for monthly or biweekly check-ins

• Private messaging or email-based connection for low-energy accessibility (slack channel private off social media coming)

• Optional group Zoom hangouts and mentor-led meetups

• Shared resources, encouragement, and goal setting

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Who Can Be a Mentee?

Anyone with EDS, HSD, or comorbid conditions like POTS or MCAS who is:

• Newly diagnosed or still seeking answers

• Feeling lost or overwhelmed

• Looking for support, tips, or emotional reassurance

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Who Can Be an Ambassador?

Ambassadors are EDS patients or caregivers who:

• Have at least 2 years lived experience managing EDS/HSD

• Feel emotionally ready to support others (with boundaries)

• Can commit to one check-in a month (via email, call, or chat)

• Want to give back to the community and reduce isolation

Bonus: We’ll give you optional monthly prompts, checklists, and training for support.

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Why It Matters

Mentorship builds confidence, reduces medical PTSD, and creates community-based education that can’t be found in a textbook. Sometimes, the best medicine is knowing someone else has walked the same path—and made it through.

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Ready to Join?

Let us know you’re interested by completing this form. Whether you’re looking for support or hoping to offer it, we’ll do our best to make a great match.

Email us at [email protected] for additional questions. Indicate in the subject line if you want to be a mentor or a mentee.