HELP THE RARE

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

Raised so far

$2,367

Aim Bright Stars – Tutoring and Consultation
Board – Our Team
- Our Organization
  
  LEARN MORE
Events – Meet Up
- - Events
  - Caregiver Lifestyle

RARE News – News & Information
- March 19, 2025
  
  News
  
  Experts Push For More DMD Clinical Trials To Include Patients Who Can’t Walk
  
  March 5, 2025
  
  Therapy
  
  Cell-Based Therapies Show Potential to Promote Repair in Multiple Sclerosis
  
  February 26, 2025
  
  Medicine
  
  Negative Pressure Vacuum Wound Therapy
  
  February 17, 2025
  
  Health
  
  Key Concepts To Build Strength in Children
Services – Rare Disease & Special Needs
Contact – Connect With Us
- FName
  
  LName
  
  Email
  
  Telephone
  
  Subject
  
  Message

News

Home Page 2

News

From Pain to Power: Barby Ingle’s Journey from Patient to Advocate to Political Influencer

Prof Hwu AADC Deficiency and Gene Therapy Interview

News

Prof. Hwu Discusses the Past and Future of AADC Deficiency

News

Samsung Enters the Rare Disease Innovation Market

June 10, 2024
by Ree Webster

News

Nick Vujicic Overcoming Challenges of Life With of No Arms or Legs

May 22, 2024
by Ree Webster

News

Wilma Rudolph A Story Of Defying The Odds

April 14, 2024
by Ree Webster

teachrare

324 15,570

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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Experts Push For More DMD Clinical Trials To Include Patients Who Can’t Walk

Cell-Based Therapies Show Potential to Promote Repair in Multiple Sclerosis

Negative Pressure Vacuum Wound Therapy

Key Concepts To Build Strength in Children

USA

Thailand

News

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