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Rare Disease Day 2026

  • Writer: Sarah Lansing
    Sarah Lansing
  • 3 days ago
  • 1 min read

Although Hepatoblastoma is listed as the 'most common' form of pediatric liver cancer, that is a misnomer, because it is not at all common. Hepatoblastoma accounts for roughly 0.5-2% of all childhood cancer diagnoses. The statistics currently stand at fewer than 1 in 1 million children diagnosed with Hepatoblastoma in the United States annually.


Rare Disease Day was established in 2008 by EURORDIS (European Organisation for Rare Diseases) in order to raise awareness for individuals impacted by rare diseases. In 2009, NORD (National Organization for Rare Disorders) partnered with EURODIS to sponsor the day in the United States.


In honor of Rare Disease Day 2026, HRN collaborated with Eureka Therapeutics to present a webinar featuring HRN's Director of Communications & Engagement (and yours truly), Sarah Lansing. I personally enjoyed the opportunity to raise awareness and and offer my perspectives as a parent who has led their child through treatment for Hepatoblastoma. My sincere gratitude goes out to the team at Eureka, for their collaboration on this event as well as their continued partnership and support of HRN's mission.


Alone we are rare, but together we are strong 🦓

(NORD's official motto)

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Video Overview: In this interview, we meet Sarah Lansing, a parent and patient advocate in the fight against hepatoblastoma. In August 2021, her son Glenn was diagnosed with Stage 3 Hepatoblastoma. After several rounds of chemotherapy and an unsuccessful liver resection surgery, Glenn received a life-saving liver transplant in February 2022. Join us, as we hear their story, and her continued advocacy work in the hepatoblastoma patient community.






Written by: Sarah Lansing



 
 
 

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