OI Has Led to More Than 82 Broken Bones for This 6-Year-Old
Chronic osteomyelitis in the clavicle. Sourced from: Shannonpercivalsmith / CC BY (https://creativecommons.org/licenses/by/3.0)

OI Has Led to More Than 82 Broken Bones for This 6-Year-Old

For many people, a broken bone would severely interrupt their life. But six-year-old Avery Balcazar has learned to live with it—even when it’s tough. As reported by CBC News, Balcazar…

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Global Registries Could Change the Lives of Hundreds of Millions of Rare Disease Patients Everywhere
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Global Registries Could Change the Lives of Hundreds of Millions of Rare Disease Patients Everywhere

Authored by Dr. Harsha Rajasimha, Founder and Executive Chairman, IndoUSrare. Co-Authored by Dr. Padma Rammoorthy, Medical Consultant, IndoUSrare. The diagnostic journey for patients with rare diseases often becomes a prolonged odyssey,…

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Uplifting Athletes’ 10,000 Mile Challenge

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Uplifting Athletes 10,000 Mile Challenge August 10-19, 2023 Are you an avid runner, swimmer, or cyclist? Do you roll on wheels of any kind or are a casual walker? Whether…

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A Single Rare Disease May Affect Only a Small Population. Yet Millions Are Impacted Worldwide
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A Single Rare Disease May Affect Only a Small Population. Yet Millions Are Impacted Worldwide

  According to an article in MedicalXpress News Today, current research indicates that rare diseases in the United States affect 25-30 million people. The numbers keep rising and rival diseases…

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He Battled Acute Flaccid Myelitis (AFM)—And Now He’s Back to Playing Baseball!
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He Battled Acute Flaccid Myelitis (AFM)—And Now He’s Back to Playing Baseball!

Two days. That’s all it took for Jill and Jeff Ackermann to watch their son’s condition mysteriously deteriorate. On Saturday, six-year-old Bryson was the energetic, athletic, and bright-eyed little boy…

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Development of a Personalized Treatment for a Single Patient Could Pave the Future for Custom Therapies
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Development of a Personalized Treatment for a Single Patient Could Pave the Future for Custom Therapies

  Professor Timothy Yu developed the custom drug milasen named in honor of Mila, an 8-year-old girl with Batten disease. The drug is the first drug specifically designed for one…

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Rare Community Profiles: Empathy through Art: A Mission to Raise Hypoparathyroidism Awareness
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Rare Community Profiles: Empathy through Art: A Mission to Raise Hypoparathyroidism Awareness

Rare Community Profiles     Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…

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