Rare Reach Festival

STORYTELLING IS POWERFUL

Everyday people affected by rare conditions share their stories on social media to help raise awareness of how their lives are impacted by their condition. Some stories are sad, some are funny, some are inspirational and many are all of these things. 

We are inviting people affected by rare conditions, their family members, the organisations that support them and the industry that works with them to submit their social media pieces  (blogs, videos and pictures) that tell a story relating to one of the themes of Rare Disease Day 2021…

Rare is many, Rare is strong, Rare is proud.

Our judging panel will choose the pieces that they think have the most impact and with the most powerful storytelling to receive awards across eight categories.

The winning entries will be promoted widely on social media and throughout the rare community to help build their profile and receive a cash prize!

First prize for winners of each category will be £100 (Industry organisation category prize to be donated to a charity of their choice). The People’s Choice award winner will receive £200.

Rare Reach Festival - Enter Now

How it works...

Entries must be submitted here between 28 February and 12 March.  Only two submissions can be submitted per person, per category. The same entry cannot be entered in more than one category and we reserve the right to change the category that your entry is judged in. 

The judges will announce their shortlisted entries on 19 March and the winners will be announced on Rare Disease UK social media on 22 March. All the shortlisted entries will then be entered into a People’s Choice award and shared widely across social media with the winner announced 1 April.

 

Who Can Submit Entries?

  • Anyone based in the UK affected by a rare condition – either the individual with a rare condition or a family member. Anyone under 18 will need their parent or guardian’s consent to enter. 
  • Groups, organisations and charities who support people affected by rare conditions in the UK (can have an international remit as long as they work with a UK resident)
  • Industry organisations with an interest in rare conditions and connections to the UK’s rare community.
28 February, 12PM
12 March
1 April
15 April
20 April

Submissions open

Submissions close

Shortlist announced / People’s Choice vote launched

People’s Choice vote closed

Vote results and winners announced

What Are The Categories?

Best storytelling by/via a voluntary group

  • Social media pieces posted by a voluntary group (must support people in the UK) on their social media channels and /or website.
  • Can involve either telling the story of the history of the group, the community or individual family/people’s stories (with permission).


Best storytelling by/via a small charity

  • Social media pieces posted by a small charity (must support people in the UK)  on their social media channels and /or website.
  • Can involve either telling the story of the history of the group/charity, the community or individual family/people’s stories (with permission).


Best storytelling by a large charity

  • Social media pieces posted by a large charity (must support people in the UK)  on their social media channels and /or website.
  • Can involve telling the story of the group/charity or the community or can be individual family/people’s stories (with permission).


Best storytelling by a family member of someone affected by a rare condition

  • Social media pieces posted by a family member of someone affected by a rare condition on their personal social media channels, website or blog.
  • Can involve telling their own story as a family member, or the story of their child or person they care for (with permission).
  • Must be UK based.


Best aspiring young influencer
(young person with a rare condition)

  • Social media pieces posted by a young person on their personal, or their parents’, social media channels, website or blog.
  • Can involve telling their own story either independently or with support from a sibling, parent/carer or support worker.
  • If under 18 permission is required from parent or guardian to enter.
  • Must be UK based.


Best aspiring young influencer 
(sibling of young person with a rare condition)

  • Social media pieces posted by the sibling of a young person on their personal, or their parents,’ social media channels, website or blog telling their story as a sibling of someone affected by a rare condition.
  • If under 18 permission is required from parent or guardian to enter.
  • Must be UK based.


Best storytelling by an individual
(over 25)

  • Social media pieces posted on their personal social media channels, website or blog (if posted via a group/charity then it should be submitted under that category).
  • Must be UK based.


Best engagement by industry

  • Social media pieces posted by  industry with an interest in rare conditions and links to the UK’s rare community.
  • Can involve either telling the story of work/engagement with the rare community or individual family/people’s stories (with permission).

What can you submit?

Any piece of social media published on your channel within the last two years that you feel represents at least one of the themes of Rare Disease Day 2021 – rare is many, rare is strong, rare is proud. 


The piece must also tell a story – for example:

  • A photo with captions about a day you met up with other people affected by your condition for the first time (rare is many).
  • A short video (three minutes or less) about the diagnostic odyssey or having new tests or treatments (rare is strong).
  • A blog post (max 1500 words) about overcoming an obstacle and learning to accept your condition or your pride in your child who is affected by a rare condition (rare is proud).

These are just ideas – the story you share is up to you, but the piece you submit must be  designed to have some kind of impact, whether it makes people understand, laugh, cry or just raises awareness!  

We would love to have submissions from all age ranges and abilities – it is the storytelling that is being judged, not how well the piece was edited or produced. 

As much as we love them, we cannot accept submissions which are just memes or TikTok dances! 

You can submit:

  • Video/animation (maximum of three minutes).
  • Blog/copy/text (maximum of 1500 words).
  • Images/photos/infographics – can be a single piece (with or without captions) or a series of images (maximum five) published as part of the same post/story.

If your piece contains more than one of the above – for example, a blog with images, please choose the primary method of telling your story (ie, if the photos are just to accompany the blog then submit it as a blog).

You cannot submit:

  • Videos which are more than three minutes long and/or were previously submitted to the Rare Film Festival.
  • More than two submissions per person, per category or the same entry in more than one category.
  • Anything which is not your original content  or does not have the relevant permissions of everyone in it to share.
  • Anything which is offensive, contains inappropriate language or activities.

 

Submissions from those under the age of 18 will require the consent of a parent or guardian.

How will the entries be judged?

The judges will score the entries based on:

  • How well does the piece tell its story? (Is it obvious what the story is about?)
  • How well does the piece express one of the themes of Rare Disease Day 2021?
  • How impactful is the piece? (Does it provoke a reaction – make you laugh, make you cry, make you think etc?)

After individually scoring the entries, the judges will  meet to discuss the entries and agree the top three shortlisted for each category. 

The Judges

We are delighted to have already confirmed some brilliant judges – check back after submissions have closed to see the whole panel!

Ceridwen Hughes – Same but Different 

laura bloom

LARA BLOOM

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related conditions. Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. Commemorating ten years in the field of patient advocacy, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020. Find Lara @larabloom

Gavin Jones

GAVIN JONES

Gavin is Global Advisor, Rare Disease at OPEN Health and brings over twenty years of biopharmaceutical industry experience. He is passionate about supporting better patient outcomes through scientific and value communications, patient activation and pathway improvement. Gavin spends time working with the patient advocacy community to ensure solutions are truly aligned with patient and care-giver needs. He is also a proud trustee board member of a patient group charity aiming to improve diagnosis and services in a rare condition. Find Gavin @LinkedIn

Laura Dibb Judge

Laura Dibb

Laura Dibb is Head of Communications at the Cystic Fibrosis Trust and has worked in the health and science communications field for over a decade. Laura started her communications career at the prestigious Royal Society (RS), disseminating key information on global issues such as climate change and biofuels. Following her time at the RS, she spent 10 years at Cancer Research UK where she played a leading role in their communications and campaign work to improve outcomes for cancer patients as well as finding better ways to prevent the disease, leading to her work to secure a ban on under 18s using sunbeds.

Rachel Farrow Portrait

Rachel Farrow

Rachel has over 20 years’ experience in the healthcare and communications industries. She has managed several agencies, was Global Vice President of Medical Communications at IQVIA for 5 years and is currently a business consultant with her own company Route 73 Consulting. Her expertise spans communications, business management, digital media, patient programmes and medical education. She is a Director of the PM Society, a not-for-profit organisation serving the pharma industry and its service agencies and she has been running an annual awards event for the industry, the PM Society Digital Awards, now in its 11th year.

Natasha Coates

NATASHA COATES

Natasha is an elite disability gymnast from Nottingham, UK. She has the rare condition called Mast Cell Activation Syndrome but despite this she has won 22 British Titles. You can find Natasha @NatashaCoatesGB

Peoples Choice Award

The winner of the people’s choice award will be decided by public vote. Voting will be open from  1 April to 20 April via text message or the Rare Disease UK website.

And a big thank you to our supporters...

Remember to vote for your favourite...