HELP THE RARE

Families in rare diseases do not receive the same funding or attention as those with high incidence rates.

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RARE News – News & Information
- July 11, 2026
  
  News
  
  When Promising Treatments Are Left on the Shelf, Families Cannot Stay Silent
  
  January 22, 2026
  
  Education
  
  Rolling Boldly Toward Awareness and Community
  
  May 4, 2025
  
  Therapy
  
  Roadmap for Children After Gene Therapy
  
  March 26, 2025
  
  News
  
  UK Daughters DNA Is Helping Other Families
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Genetic

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Creating a Genetic Profile to Improve Diagnosis

teachrare

324 15,623

Providing #educational services for children in the #raredisease, undiagnosed disease & #specialneeds communities
📌 International #education services

One of my favorite parts of The Rare Journey Series is seeing science, family stories, and imagination come together through the incredible artwork of @lomakina.space . 🎨🧬

From AADC deficiency to Friedreich’s ataxia and now Duchenne muscular dystrophy, Anna has created a visual world that makes complex science feel approachable, warm, and exciting for young readers.

But look closely. 👀

Each illustration is more than simply beautiful. Hidden throughout the pages are little Easter eggs inspired by the real families behind each story. A favorite activity. A meaningful place. A family memory. A tiny detail that might seem ordinary to most readers but means everything to the people whose journey inspired the book.

That is what makes Anna’s artwork so special.

Every page helps teach the science, but it also reminds children that behind every rare disease are real people, real families, and wonderfully unique lives.

We are incredibly grateful to Anna for helping Prof. Hong and the red panda come alive, one rare journey at a time. ❤️

Which cover is your favorite?

#RareDisease #rarediseaseeducation #childresbooks #inclusiveeducation #rarediseaseawareness

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Open post by teachrare with ID 18421442314157540

One of my favorite parts of The Rare Journey Series is seeing science, family stories, and imagination come together through the incredible artwork of @lomakina.space . 🎨🧬

From AADC deficiency to Friedreich’s ataxia and now Duchenne muscular dystrophy, Anna has created a visual world that makes complex science feel approachable, warm, and exciting for young readers.

But look closely. 👀

Each illustration is more than simply beautiful. Hidden throughout the pages are little Easter eggs inspired by the real families behind each story. A favorite activity. A meaningful place. A family memory. A tiny detail that might seem ordinary to most readers but means everything to the people whose journey inspired the book.

That is what makes Anna’s artwork so special.

Every page helps teach the science, but it also reminds children that behind every rare disease are real people, real families, and wonderfully unique lives.

We are incredibly grateful to Anna for helping Prof. Hong and the red panda come alive, one rare journey at a time. ❤️

Which cover is your favorite?

#RareDisease #rarediseaseeducation #childresbooks #inclusiveeducation #rarediseaseawareness

teachrare Oct 3

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We are proud to announce the third book in The Rare Journey Series: Prof. Hong Explores Duchenne Muscular Dystrophy. #duchennemusculardystrophy #raredisease #therarejourneyseries

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Open post by teachrare with ID 18127300747649413

We are proud to announce the third book in The Rare Journey Series: Prof. Hong Explores Duchenne Muscular Dystrophy. #duchennemusculardystrophy #raredisease #therarejourneyseries

teachrare Oct 2

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Rylae learns Chinese #aadcdeficiency #chineseclass

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Open post by teachrare with ID 18175830802453555

Rylae learns Chinese #aadcdeficiency #chineseclass

teachrare Sep 28

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Rylae had a dislocated hip and underwent surgery to give her the chance to learn to walk. Just eight months after her life-changing brain surgery (gene therapy), she faced yet another challenge.

Through it all, she never lost her smile. She stayed bubbly, brave, and full of joy. Her resilience continues to inspire us every single day. 💜

#RylaesJourney #AADCDeficiency #hipdysplasia #hipsurgeryrecovery #spicacastlife

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Open post by teachrare with ID 17996993123979169

Rylae had a dislocated hip and underwent surgery to give her the chance to learn to walk. Just eight months after her life-changing brain surgery (gene therapy), she faced yet another challenge.

Through it all, she never lost her smile. She stayed bubbly, brave, and full of joy. Her resilience continues to inspire us every single day. 💜

#RylaesJourney #AADCDeficiency #hipdysplasia #hipsurgeryrecovery #spicacastlife

teachrare Jul 13

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When Promising Treatments Are Left on the Shelf, Families Cannot Stay Silent

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When Promising Treatments Are Left on the Shelf, Families Cannot Stay Silent

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Roadmap for Children After Gene Therapy