Shine A Light on Neurofibromatosis now streaming on The Disorder Channel
09 September 2020
With Its Film Fest Postponed by the Pandemic, Rare Outreach Coalition starts its own Streaming Channel "The Disorder Channel” and Nerve Tumours UK is part of it with its movie Shine A Light on Neurofibromatosis to raise awareness for those affected by the condition.
The goal of Rare Outreach Coalition is to create opportunities for education, awareness, conversations, and collaborations across multiple rare disease communities.
Rare Outreach Coalition was forced to postpone its May 18th event in New York City (Disorder: The Rare Disease Film Festival) due to COVID-19. ROC has now launched The Disorder Channel as a new platform to provide another showcase for rare disease films. It features many previously unseen rare films and original videos. The channel also includes some films intended for this year’s festival, as well as favourites from previous years. The aim is to raise awareness, find a cure and spread hope for those affected with a rare disease or a genetic disorder.
Our movie does have a global reach and attracts not only viewers that are affected but predominantly attracts those working in the medical profession. The stories of Emily Owen and the Burbridge Family support the founders and our cause to raise awareness and will educate those who are not aware of the impact to a persons live affected by the condition. Nerve Tumours UK is more than grateful to be able to be part of the platform from its beginning.

The Disorder Channel is now available to the millions of homes with a Roku or Amazon Fire TV. Just search for The Disorder Channel to add it to your device. You can also add the channel to your Roku device with our code DISORDERTV. We’ve collected films about the rare disease patient experience. Stories of hope in the face of the longest odds.
This year the Disorder Channel is one of the Partners at the Global Genes A RARE Patient Advocacy (un)Summit, you can find more details and register for the summit below.
Read about how our Shine A Light Movie made finalist at the PM Society Awards 2020
Read More
Filter News

Joy’s NF1 story
Joy describes living with NF1; her son's diagnosis and support at school; fundraising and shining a light on NF
Read More
A man on a mission: Onno Faber and his NF2 journey
Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE
Read More
Kate’s NF1 Story & DanceAthon
Kate describes her son's NF1 journey and how NTUK supported them
Read More
Strictly Come Running: London Marathon Class of 2021
Congratulations to our class of 2021 London Marathon runners
Read More
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting
Read more about the England NF2 meeting - working together to improve the experience of NF2 patients
Read More
Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
Read More
Student Voice Prize 2021
The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!
Read More