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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder of upper and lower motor neurons that results in progressive motor impairment. ALS is the most common disease of motor neurons with an annual incidence of approximately 1.7–2.5 per 100,000 people. It is a terminal condition with a typical life expectancy of 2–5 years from symptom onset. […]

Lisa Sarfaty: Help support Rare Disease Day

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Published Online: Feb 27th 2023

Our society partner, NORD (The National Organization for Rare Disorder) has planned several initiatives to support this year’s Rare Disease Day on 28 February. 

These activities are aimed at raising awareness about rare diseases and the challenges faced by people living with these conditions.  In this video, Lisa Sarfaty, NORD’s VP of Communication and Engagement, shares more details about these plans and importantly information on how you could get involved to help spread the message and bring more supporters to the cause.

Questions 

  1. The 28th February is Rare Disease Day, how is NORD supporting the day this year? (0:16)
  2. How could people get involved in supporting Rare Disease Day? (1:58)

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.

rarediseaseday.org

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