Rare Disease Portrait to debut at Rare Disease Film Festival next month.


Disorder: The Rare Disease Film Festival is pleased to be partnering with the Rare Disease United Foundation. A signature effort of RDUF is “Beyond the Diagnosis” which recruits painters from around the world to create portraits of children with rare diseases.

The latest of these portraits will be unveiled at the film festival on October 2nd. Master artist Lucas Kolasa has become devoted to the rare disease community and will be unveiling his most recent portrait at Disorder: The Rare Disease Film Festival. His latest work depicts Purnell, a young boy diagnosed with a rare and fatal disease called Niemann-Pick Type A. The portrait will be presented after a screening of “Imagine” a short film by Carl Mason about a young girl facing Niemann-Pick Type C.

"I find it extremely satisfying to work on a project that has such a positive impact on society,” says Kolasa. “The best part is that I get to meet some of the coolest kids and their families. The exhibit builds a great community at the same time, raising awareness, and inspiring people around the world to find treatments for these people.”

Kolasa is the Project Director for Beyond the Diagnosis and an active a participating painter. He is a master artist currently developing new pointillism techniques using syringes to add tiny drops of paint to his canvas.

“We are honored to have Purnell and his family participating in Beyond the Diagnosis representing Niemann-Pick disease. Beyond the Diagnosis has increased research and awareness of over 100 rare diseases. We are so grateful to our talented artists and the families that share their amazing children with us,” said Patricia Weltin, CEO of Rare Disease United Foundation.

“We're excited to be a part of Beyond the Diagnosis and to bring awareness to this rare disease. We've received so much support from the Niemann Pick Type A (NPA) and Rare Disease communities, and we are humbled and honored for Purnell to be the representative of NPA. We hope to raise awareness and resources to advance treatment options for this and other rare diseases.” said Purnell's mom Taylor Sabky.

Disorder: The Rare Disease Film Festival will screen more than 30 films over two days, shining a light on life with two dozen rare diseases.

“This is an ideal partnership for our film festival,” says D:RDFF co-founder Daniel DeFabio. “Just as our films aim to put a face and a real human story to the data of a rare diagnosis, so are these portraits creating that emotional personal connection.”

Guests of the film festival will have the opportunity to view several other portraits from the “Beyond the Diagnosis” collection as they will be on display in the auditorium's lobby. Among these will be a portrait of Colin Hayes, who lost his life to Menkes Syndrome this year. Danielle Hayes is his mother and a staff member of the film festival. She will see her son's portrait for the first time at the event.


Disorder: The Rare Disease Film Festival will screen more than 30 films over two days, shining a light on life with two dozen different rare diseases. It was founded by two rare disease dads hoping to spark more conversations, collaborations and maybe cures. The audience will have an opportunity for questions and answers with some of the filmmakers following the presentation of their film.

Between the slates of films rare disease researchers and patient advocates will also share stories from their experience. The event has support from NORD, The Mighty, RDUF, MassBio, Global Genes, Magic Wheelchair,  Rare genomics Institute, Shire, Vertex, Sanofi Genzyme, Premier Research, The Menkes Foundation, The Patient Experience Project, Horizon Pharma, 32 Mile Media, Alnylam, Cambridge BioMarketing, and FDNA.




Press photos from the films are available here

Press photos of the paintings are here

Broadcast or web video clips are available on request.

The list of films is online at

For press local to Boston we will hold a media preview event 9/15 1pm in Kendall Square.

Press contact:

Daniel DeFabio

daniel@  this website