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

Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
Read More
Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read More
Nigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
Read More
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More_800_600_s_c1.png)
Oliver Bromley’s NF Story
Oliver Bromley, with NF1, was asked to leave a restaurant due to his appearance, sparking a call for greater awareness and ed
Read More
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More