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
Christmas Message from the Nerve Tumours UK team
Thank you from all of us at Nerve Tumours UK
Read MoreSpecialist NF Nurses/ Advisors’ Conference 2023
Find out more about this year's meeting with our Nurses
Read MoreNational NF2 Meeting 2023
A report from the 2023 England NF2 meeting, with healthcare professionals & charities working together for the NF2 community
Read MoreAvastin Side Effects
Jo has collated shared personal experiences, with medical and general advice on Bevacizumab (brand name Avastin)
Read MoreDavid’s Story - Community and Acceptance
David contacted NTUK after seeing our advertising campaign at King's Cross Station in London last year. Read his story:
Read MoreMeet Clare
Clare is a Specialist NF Nurse based at Ryegate Children's Centre at Sheffield Hospital, covering the South Yorkshire region
Read MoreTracey, Specialist NF Nurse
Meet Tracey. She is based in Southampton & covers Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.
Read MoreMeet Carolyn
Specialist NF Advisor Carolyn is based in Birmingham and covers the West Midlands, Shropshire and Staffordshire.
Read MoreToday is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read More