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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?

9 Responses to “What are Your Favorite Rare Disease Movies?”

  1. Paul Clancy says:

    “Here, Us, Now” is a powerful 7 very moving film about the Hempel family and their quest for a cure for their beautiful twin girls Addison & Cassidy who have Niemann Pick C. The Wall Street Journal also did a wonderful multi chapter piece with video interviews following the Hempel family for 6 years – see the piece here

  2. Fabiola says:

    “La decisión de Ann”

  3. Karen Durrant says:

    Morquio Syndrome (MPS IV) is what one of the children has in “The MIghty.”

  4. Kell Brigan says:

    “First, Do No Harm” isn’t about a rare disease (epilepsy), but is still a great look at destruction presumptions in modern medicine. In other words, how the system is totally askew…

  5. Javier says:

    The elephant man

  6. Erica says:

    Simon Birch, the actor has MPS IV

  7. Chuck Mohan says:

    A Few Good Men, staring Jack Nickelson and Tom Cruise. The death of a solider is the result of a Mitochondial Disease; MELAS.

    • Marsha Lanes says:

      I’ve seen this movie many times and never knew Santiago had MELAS. How is this revealed?

  8. Erin Beavers-Cochran says:

    “The Boy in the Plastic Bubble” (it was a made for TV movie from 1976 inspired by the life of David Vetter). The protagonist had an immune deficiency disease similar to the one I have. It wasn’t 100% accurate and was obviously dramatized, but it raised awareness.