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Event Highlights

Film line-up

Rare in Common

The 2017 Emmy-nominated documentary follows the experiences of rare families: their struggles, their strength, and their hope for the future as they confront the challenges of living with a rare disease.

25 min

Directed by Alisa Shakarian & Marc Dole  

This is Michelle

William H. Macy narrates the inspiring story of Michelle Hall, a young woman living with Epidermolysis Bullosa (EB). The film highlights her perseverance and hope she has for medical professionals to find a cure.

8 min

Directed by Patrice Lighter

Menkes Disease: Finding Help & Hope

Menkes Disease, a rare fatal genetic disorder, also known as Kinky Hair Syndrome, is the impaired ability to metabolize copper. This 10 minute documentary is narrated by Oscar nominated actress Mary McDonnell.

5 min

Directed by Daniel DeFabio  

The Voices of Siblings in Rare Disease

Hear the unique and fresh perspectives of siblings of children with the rare, life threatening diseases Leukodystrophy, GM-1, and Canavan Disease.

7 min

Directed by Blyth Lord

New lives: stories linked by Duchenne and Becker Muscular Dystrophy (Trailer)

A global view on the impact of Duchenne and Becker muscular dystrophy on individuals and families through interviews with individuals and families in several countries including Spain and the Netherlands. This trailer was not shown as part of the DISORDER film selections in the fall of 2017. This is preview of the documentary which will premiere in it’s full length in 2019.

2 min 

Directed by Micro de Vito and Marco Fiata


Finn provides insight into Hunter’s Syndrome, a rare terminal genetic disorder, and takes an experiential look at two parents coming to terms with an unfortunate reality: that their child is going to die, but hope his life will not be in vain with the legacy he'll leave behind.

7 min

Directed by Christian Schultz

Life & Atrophy

After their son, Miles, is diagnosed with Spinal Muscular Atrophy, a devastating neuromuscular disease causing progressive muscle loss, Nikki and Tony McIntosh seek an experimental treatment to save their son.

24 min

Directed by Gareth Burghes


This is the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C; an extremely rare, incurable disease which causes neurological decline and dementia. Only 800 people around the world suffer from this, the majority of whom are innocent children who were born with the genetic condition.

10 min

Directed by Carl Mason

Tess Is Not Alone

When the parents of 8-year-old Tess Bigelow learned of her ultra-rare genetic disorder, they believed she was the only one of her kind. This short documentary tells the story of their worldwide quest to find others like Tess.

8 min

Directed by Bo Bigelow

Up for Air (Trailer)

Over the course of five years, a film crew followed Jerry Cahill as he lived his everyday life; an everyday life unique compared to many. Throughout this documented journey, Jerry demonstrates how a positive attitude, relentless self-discipline, and physical perseverance allow him to battle cystic fibrosis and consistently overcome the odds set against him.

3 min

Directed by Artem Agafonov

The Magic Bracelet

'The Magic Bracelet' mysteriously links best friends Angela, Ashley and a cheese obsessed dog. When Ashley inherits a totem bracelet from a friend who died of Mitochondrial Disease - the same illness she herself battles - it leads the girls on a mystical journey of discovery in which a new level of friendship, family and healing is revealed. This project was created by Make A Film Foundation to fulfill the wish of 15 year old Rina Goldberg whose final words to her mom before she died of Mitochondrial disease were 'Promise to take care of my film.'

Directed by Jon Poll, 18 minutes

Addresses Mitochondrial Disease

Rare Is Not an Excuse

Parents, patients and healthcare professionals discuss their personal and professional experiences with tackling rare genetic diseases and not giving up despite the challenges. This film addresses NGLY1.

6 min

Directed by Jason Cohen

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