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Rare Disease

It Was All a Dream

Editor’s Note: Patient Worthy is honored to share Michelle Patidar’s patient story, provided to us by our friends at Elephants & Tea. To see the

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From our Friends International Rett Syndrome FoundationIt's TIME! Registration is officially open for both the ASCEND 2026 Rett Syndrome National Summit and the annual Scientific Meeting!

Over 5 impactful days, parents, families, clinicians, researchers, and Rett organizations from around the world will connect, learn, and drive progress—together. This summer, we're excited to head to the Mystic Lake Center & Hotel, located in beautiful Prior Lake, 25 minutes outside the Twin Cities. We can't wait to see you there!💜

Lock in early bird pricing by registering by April 17th. For event information, registration, room blocks, FAQs, and more:

Scientific Meeting 🔗: www.rettsyndrome.org/researchers/annual-rett-syndrome-scientific-meeting/
ASCEND 🔗: www.rettsyndrome.org/families/rett-education/ascend-national-summit/
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From our Friends International Rett Syndrome Foundation

@Haley's Hope #Pompe #disabled
·
🚐♿ This space isn’t extra — it’s access.
The striped area next to my van isn’t there by accident. It’s where my wheelchair ramp needs to deploy so I can get in and out.
When someone parks even a few inches over that line, I may not be able to access my van at all — not because of my wheelchair, but because the access space is blocked.
When I’m riding with others, we can usually make it work. But as I look toward driving independently, that won’t be possible if this space isn’t kept clear.
I truly believe most people don’t realize this, but It’s not about blame — it’s about awareness. A small parking adjustment can be the difference between independence and being completely stuck.
Please help spread the word. Awareness creates access.
... See MoreSee Less

@Haleys Hope  #Pompe #disabled
 ·
🚐♿ This space isn’t extra — it’s access.
The striped area next to my van isn’t there by accident. It’s where my wheelchair ramp needs to deploy so I can get in and out.
When someone parks even a few inches over that line, I may not be able to access my van at all — not because of my wheelchair, but because the access space is blocked.
When I’m riding with others, we can usually make it work. But as I look toward driving independently, that won’t be possible if this space isn’t kept clear.
I truly believe most people don’t realize this, but It’s not about blame — it’s about awareness. A small parking adjustment can be the difference between independence and being completely stuck.
Please help spread the word. Awareness creates access.

What's next after symptoms? 🧐 Learn more about the diagnostic journey for IgA Nephropathy. Click the link to share your story: bit.ly/3VuxFDV
#igan #kidneyhealth #renalhealth #PatientWorthy 💉
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Whats next after symptoms? 🧐 Learn more about the diagnostic journey for IgA Nephropathy. Click the link to share your story: https://bit.ly/3VuxFDV 
#IgAN #KidneyHealth #RenalHealth #PatientWorthy 💉
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