Helpline 07939 046 030

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

Filter by Date
Category
Reset

Hannah’s NF1 story

9 year old Hannah is running the Junior Great North Run, so other children with NF can also have access to doctors & nurses

Read More

RAISING THE ROOF COMEDY NIGHT

First night on the NTUK 40 years Comedy Circuit 2022 at London's Backyard Comedy Club

Read More

Chloe’s NF1 story

Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong

Read More

“Happy Easter”

A message from Karen, our Charity Director, wishing you a very Happy Easter!

Read More

Lisa helps Shine a Light on Neurofibromatosis in Belfast

Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May

Read More

Alex’s NF1 story

Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications

Read More

Sumeeth’s Schwannoma story

Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis

Read More

Laura’s NF1 story

Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1

Read More

Kian’s NF2 Blog

Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics

Read More