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Jun. 7, 2013

TOPIC: Patients & Members

What are Your Favorite Rare Disease Movies?

Posted by admin

Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to compile a list of movies that could make up a “rare disease film festival.”

Full disclosure: I have not seen any of the films I mention, which is precisely why I wanted to put a list together and get your suggestions! In the 1980s and 90s, there were a few award-winning Hollywood movies that featured rare disease stories.

Some of these included:

  • The Elephant Man (1980) featured Anthony Hopkins and Anne Bancroft, and received 8 Academy Award nominations including for best picture. The movie was based on the true story of Joseph Merrick who at the time was thought to have neurofibromatosis or elephantiasis, but may have had Proteus syndrome.
  • My Left Foot (1989) focused on a man with cerebral palsy. The movie won the Academy Award for best actor (Daniel Day-Lewis) and Best Actress in a Supporting Role. It was also nominated for 3 other Academy Awards.
  • Lorenzo’s Oil (1992) starring Susan Sarandon and Nick Nolte was nominated twice for Academy Awards and focused on the rare disease adrenoleukodystrophy (ALD).

Although there have been several popular and star-studded films in recent years, including Extraordinary Measures (2010) and 50/50  (2011), the greatest critical success has been achieved through documentaries.

The most successful of these movies focus directly on the experiences of people living with rare diseases:

  • Music By Prudence (2010) won the 2010 Academy Award for Best Documentary Short. The film features a woman living with arthrogryposis and her Afro-fusion band Liyana – all musicians living with disabilities.
  • Darius Goes West (2006) follows a boy living with Duchenne muscular dystrophy and his friends as they go on a road-trip across the country.  As of June 2009, the film had won an unprecedented 28 film festival awards.
  • Blindsided (2006) won for best documentary at two film festivals and was an official selection at two other film festivals. The movie features a boy living with Leber’s hereditary optic neuropathy.

The takeaway for me is that the modern film audience appreciates the authenticity of hearing from patients directly. We all know how compelling rare disease stories can be, and these films underscore the power of video for raising awareness for rare disease patients.

But some excellent films have received very little critical notice.  Success in helping viewers experience another person’s reality doesn’t always correspond to awards or success at the box office.  So, what are your favorite rare-disease  movies?