Trending Topic

A digital rendering of a human brain with highlighted neural pathways and electric activity, visualizing brain function.
18 mins

Trending Topic

Developed by Touch
Mark CompleteCompleted
BookmarkBookmarked
Pavel Burko, Ilias Miltiadis, Mahsa Alavi

Amyotrophic lateral sclerosis (ALS) is characterized by the degeneration of both upper and lower motor neurons, which ultimately leads to muscle weakness, atrophy, spasticity and contractures.1 ALS typically manifests in the 50–60 years age range, although familial cases may present in late adolescence or early adulthood.2 The time from the first symptom to diagnosis is approximately 10–16 […]

Lisa Sarfaty: Exploring and addressing inequities in rare diseases

Share
Facebook
X (formerly Twitter)
LinkedIn
Via Email
Mark CompleteCompleted
BookmarkBookmarked
Copy LinkLink Copied
Published Online: Feb 27th 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

Share
Facebook
X (formerly Twitter)
LinkedIn
Via Email
Mark CompleteCompleted
BookmarkBookmarked
Copy LinkLink Copied
Close Popup