ZebraPgh - Peer Support Community & Resources

ZebraPgh - Peer Support Community & Resources Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from ZebraPgh - Peer Support Community & Resources, Health & Wellness Website, Pittsburgh, PA.

Volunteer group building an open-source/community-sourced website of (free) resources and organizing monthly meet-ups in Pittsburgh, PA, USA for Ehlers-Danlos Syndrome (EDS) and Hypermobile Spectrum Disorders (HSD)
Zebras supporting zebras!

03/01/2026

✨ It’s Rare Disease Day ✨

💙 Show Your Rare. Show You Care. 💜

Every rare diagnosis represents a real person, a real journey, and a community that deserves to be seen.

🦓 We want to see YOU today!
How are you showing your stripes?

📸 Post your photos
🏷 Tag us
💬 Tell us your story in the comments

Let’s fill today with awareness, advocacy, and support for the rare disease community.

03/01/2026

Lots of zebras out here 🦓🖤💕🤗

“Three systems showed significant enrichment in hEDS patients:🧬 The immune/HLA axis: the most prevalent signal in the co...
02/25/2026

“Three systems showed significant enrichment in hEDS patients:
🧬 The immune/HLA axis: the most prevalent signal in the cohort
🧬 Collagen and connective tissue pathways: present, but not in everyone
🧬 Mitochondrial energy production: unexpected, and potentially important for understanding fatigue and skeletal fragility

Seven genes also cleared genome-wide significance, all involved in how cells sense and respond to mechanical stress.

The sample is small, the findings need independent replication, and the authors filed a patent that limits access to some data, but this is the kind of work that shifts how we understand hEDS.

Not one gene.
Not just collagen.
A multi-system condition that needs a multi-system framework.”

Swipe through for the full breakdown. 👉

📄 Shirvani A, Shirvani P, Holick MF. Multi-System Genetic Architecture of Hypermobile Ehlers–Danlos Syndrome: Integrating Machine Learning with Subject-Level Genomic Analysis. Genes. 2026;17:211.

Extremely relatable to me…. 💕
02/22/2026

Extremely relatable to me…. 💕

THIS 👇👇👇
02/14/2026

THIS 👇👇👇

So many interesting webinar topics coming up! Should we screen any of these at our monthly meet-ups?
02/10/2026

So many interesting webinar topics coming up! Should we screen any of these at our monthly meet-ups?

Some exciting webinars can now be booked through our online shop, covering a range of topics that impact our members. Webinars take place on Zoom with time for Q&A. Coming up we have:

▸Saturday 28th February, 2026 - 11am
Neurobiological and neuropsychological disturbance in EDS with Dr Matt Westerman, Cognitive Neuroscientist and Postdoctoral Researcher.

▸Saturday 28th February, 2026 at 2pm
The intersection between diet, neurodivergence and EDS and HSD with Alison Holloway, Registered Dietician.

▸Wednesday 4th March, 2026 at 6.30pm
The overlap between Autism and EDS and HSD with Dr. Emily Casanova, Neuroscientist, evolutionary biologist and biomedical scientist.

▸Saturday 14th March, 2026 at 11am
The Youth perspective – Transitioning from childrens to adult services with a chronic illness, reasonable adjustments & extra support in Higher Education with Katie Killick, second-year law student, social media creator, and founder of Chronic Youth CIC.

▸Saturday 14th March, 2026 at 2:30pm
A pain in the hypermobile neck with Jeannie Di Bon, Movement Therapist.

▸Tuesday 31st March, 2026 at 7:30pm
Everyday eating with EDS and HSD: Chewing, swallowing, and beyond with Christina Semonick, qualified Speech and Language Pathologist.

▸Saturday 11th April, 2026 at 2pm
The effect of HSD/hEDS on the pelvic floor in females with Bill Taylor MSc PT, Physiotherapist.

▸Wednesday 22nd April, at 7.30pm
Hypermobility and touch – how does a hypermobile system respond to somatosensory and somatomotor input with Anna Maria Mazzieri, Soft Tissue Therapist and Educator.

▸Wednesday 29th April, at 7.30pm
The benefits of using plant Medical cannabis or Cannabinoid Medicine combined with mindbody and functional medicine approaches in Chronic Illness, targeting the Endocannabinoid System (ECS) with Dr Gordon, double board-certified medical doctor.

To book a place on any webinar or course please click here: https://shop.ehlers-danlos.org/product-category/webinars-and-events/

After booking you will receive an email with the webinar link and passcode in the notes section on your purchase confirmation. This may take a few hours to come through.

If you book on and are unable to make the date and time of the live webinar for any reason you will be able to access the recording after the event.

After booking you will receive an email with the webinar link and passcode in the notes section on your purchase confirmation. This may take a few hours to come throuugh. ⁠

If you book on and are unable to make the date and time of the live webinar for any reason you will be able to access the recording after the event.⁠

Please note, our website can only accept orders with a UK postcode. If you live outside of the UK, please use the following address when registering: International House, 45-55 Commercial Street, London, E1 6BD

Food for thought. Safety first 💙♥️
02/07/2026

Food for thought. Safety first 💙♥️

💯🙌🤗🙏💕
02/06/2026

💯🙌🤗🙏💕

In these dark times, we must lean on each other

February 2026 Meet-up has been scheduled! Check out the Events tab for more details. And don't forget to fill out the su...
02/06/2026

February 2026 Meet-up has been scheduled! Check out the Events tab for more details. And don't forget to fill out the survey! https://bit.ly/PGHmeetup

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Pittsburgh, PA

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