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Allan A Lima Pereira, Gabriel Lenz, Tiago Biachi de Castria

Despite being considered a rare type of malignancy, constituting only 3% of all gastrointestinal cancers, the incidence of biliary tract cancers (BTCs) has been increasing worldwide in recent years, with about 20,000 new cases annually only in the USA.1–3 These cancers arise from the biliary epithelium of the small ducts in the periphery of the liver […]

Lisa Sarfaty: Exploring and addressing inequities in rare diseases 

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Published Online: Feb 28th 2023

Rare diseases can present numerous challenges for those living with these conditions and the healthcare professionals caring for them. In this interview we discuss some of these with Lisa Sarfaty, VP of Communication and Engagement for NORD (The National Organization for Rare Disorders) and explore ways in which they could be tackled. 

Questions

  1. Could you tell us a little about the inequities surrounding living with a rare condition? (0:18)
  2. What systemic changes do you think are needed to address these and generate change? (3:02)

We hope that this conversation can continue our work to help support the rare disease community, increase awareness and improve understanding.

Disclosures: Lisa Sarfaty has nothing to disclose in relation to this video interview.

Support: Interview and filming supported by Touch Medical Media Ltd. Interview conducted by Gina Furnival.

Additional resources

rarediseaseday.org

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