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Native valve infective endocarditis (IE) is rare, with an incidence of 3–7 cases per 100,000 person-years.1,2 Cardiac structural complications from local infection extension include valvular destruction, peri-annular abscess and fistula formation. Left ventricular pseudoaneurysm (LVP) from IE is exceedingly rare, occurring in <1% of cases, and is associated with high morbidity and mortality. Diagnosis is challenging due to nonspecific symptoms […]

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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