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
Ragbir’s London Marathon
Ragbir is the Paediatric Lead for NF1 in Leeds and is running the London Marathon
Read MoreRare Disease Day 2023
NTUK joined in with Rare Disease Day 2023, helping raise awareness of how better coordination of care can improve lives.
Read MoreAshley’s NF1 story
Ashley loves red pandas, he's a 32 year old IT Specialist and has NF1. He is running a half marathon to raise NF awareness
Read MoreGuy’s & St.Thomas’s Monthly Care Awards
NF paediatric nursing team, Mandy and Katrina win the Guy’s and St Thomas’ Hospital November CARE Award 2022
Read MoreCost of Living Crisis - Initiative
NTUK have co-signed an open letter to the Chancellor of the Exchequer on the cost of living
Read MoreLiving with NF1: psychological impact & experiences
Research: Understanding the reality of the NF1 journey from diagnosis to daily life, and the emotional impact it has
Read MoreKian’s NF2 Blog
Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics
Read More