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Niemann-Pick UK are set to launch ‘Invisible Me’ campaign and short film ‘Invisible Manners’

The small charity Niemann-Pick UK are launching a campaign, Invisible Me, in line with their short film, Invisible Manners, set to be launched at the end of 2021. Invisible Me will explore the day-to-day experiences of those affected by invisible illnesses, and they want your help! Find out more about this exciting project below, and ways in which you can get involved and support their campaign.

Everyone has felt invisible at times, overlooked, or misunderstood. But this is only amplified when you have a rare condition that many others may not fully understand or perhaps even be aware of at all. Feeling “invisible” changes meaning from person to person and could range from a day-to-day struggle to a sense of a lack of adequate representation in the media.

Others who have already kindly contributed towards the Invisible Manners project have offered a wide range of experiences in which they felt invisible because of their rare disease, such as being questioned for using a disabled parking space or being picked last for sports teams at school. In essence feeling “invisible” just adds extra difficulty and uncertainty to the life of an individual with a rare disease and is often founded on ignorance of conditions that are not immediately identifiable. 

“Everyone has felt invisible at times, overlooked, or misunderstood. But this is only amplified when you have a rare condition that many others may not fully understand or perhaps even be aware of at all. “

​Eleanor Lily Taggart, Communications Assistant, Niemann-Pick UK / International Niemann-Pick Disease Alliance

As such Niemann-Pick UK wanted to do something about the lack of representation of invisible illnesses, with the hope that it would encourage a bit more kindness and understanding. Niemann-Pick UK is a small charity that is dedicated to making the lives of those affected by Niemann- Pick disease, through raising awareness, providing practical and emotional support, and facilitating research into potential therapies. It was after speaking with community members affected by ASMD Niemann-Pick Disease Type A & B, that NPUK realised the need for more of a focus on those conditions that are not immediately visible, as members of the ASMD community raised concerns that they were often overlooked.

So, NPUK, got to work and began to develop a campaign focused on “invisible illnesses”, with the hope it could speak not just to those affected by Niemann-Pick disease, but also the wider rare disease community. After the success of NPUK’s previous short film, Go Make Memories (2019), NPUK were keen to work on another similar project. But of course, COVID-19 had other ideas, and as such after a lot of head scratching and mind mapping, they came up with Invisible Manners, a short animated film that would feature a poem, heavily influenced by the experiences of those with an invisible illness and those who have at times felt invisible because of their condition, and read by rare disease community members.

Invisible Manners is really coming together, through the kind support of the NPUK community, wider rare disease community and many others who have lent their time, enthusiasm, and creative skills to the project. The extremely talented animator, Lingxi Zhang, is creating a striking animation that perfectly compliments the depth of the poem, and NPUK also manged to secure the involvement of a few familiar faces, actor and musician, Billy Boyd (The Lord of the Rings), comedian, writer and actress, Isy Suttie (Peep Show, Damned), and actor, Ralf Little (The Royle Family, Two Pints of Lager and a Packet of Crisps), are reading lines in the poem, and actress Weruche Opia (I May Destroy You), is set to read the epilogue.

Likewise, some very talented musicians from the northeast, the location in which the NPUK Office is situated, have kindly offered their tracks to be used during the film.  Electronic duo Badger (Christopher Maltby and Simeon Soden) have provided their atmospheric track “Manchild’s Cat”, which will be used in the introductory title sequence, and former band Lilliput, have provided their track “Heavy Clouds (Believe)” which will close the film.

Invisible Manners is really coming together, through the kind support of the NPUK community, wider rare disease community and many others who have lent their time, enthusiasm, and creative skills to the project.”

​Eleanor Lily Taggart, Communications Assistant, Niemann-Pick UK / International Niemann-Pick Disease Alliance

As the film has grown in scale and support, NPUK really want to make the entire campaign something special, and push for a project that adequately reflects the scope and depth of what an “Invisible illness” can be. This led them to develop the promotional campaign that will run alongside, “Invisible Me”, which will look a little closer at the experiences represented in the film and provide a little more explanation as to how one’s day-to-day experiences are affected when living with an invisible illness. This campaign will run across the NPUK social media channels and will include video and written stories and experiences from the rare disease community.

This is where you come in, NPUK wants to hear from you! Can you think of a time that your condition, or the condition of a loved one, was perhaps overlooked, misunderstood, or made to feel an encumbrance on someone else? NPUK would love to hear from anyone who considers themselves affected by invisible illness, this does not just mean those who have an invisible illness but also parents, guardians, family, and friends. Any experience or story is valid and important, however trivial it may seem to you, this project is all about pushing for kindness and equal treatment of all abilities and conditions. Please get in touch with NPUK Communications Assistant Eleanor Taggart for more details and information on how you can get involved: 


If you would like to find out more about the Niemann-Pick UK / International Niemann-Pick Disease Alliance please click the buttons below: 

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