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 MoreFilter News
Tate’s Shine A Light Bikeathon
Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!
Read MoreAccess to your GP
We want to hear from you… Help us improve services by completing a quick survey
Read MoreLondon Marathon 2024 Team NTUK
Thank you and congratulations to Team NTUK for their marathon effort
Read MoreThomas’ NF1 story
Thomas describes growing up with NF1, supporting Liverpool FC and taking on challenges with support from his wife
Read MoreMeet Jessica, new Specialist NF Nurse
Jessica will work with Specialist NF Nurse Helen Tomkins, supporting families across Devon and Cornwall.
Read MoreRare Disease Day 2024
Read our update on the events and meetings NTUK attended to help raise awareness of NF
Read MoreJohnathan’s story
Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people
Read MoreJen’s NF1 story
Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.
Read MoreCharlotte & Evie’s story
'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.
Read More