<div><strong>Please help us to develop "A Rare Life", an ambitious charity feature film which will tell a fuller story of the rare disease experience and the impact on those affected and their families: </strong>
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<div>My name is John and I'm both a writer/director (Apprentice Films), and rare disease advocate. I have worked within the rare space for the best part of eight years with the small charity Niemann-Pick UK (NPUK), focusing primarily on patient empowerment and awareness raising for the ultra rare genetic condition(s) Niemann-Pick, as well as rare diseases more broadly.
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<div>We have developed a number of short films* over the years to help tell the stories of the many people I have met, that I am now proud to call friends for life.
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<div>However, with the economic "cost of living" crisis charities and their communities are struggling more than ever, we are no different, which is why in 2024 I know we have to go bigger and do better, to help push the envelope further than ever before. It is only with this that we can truly elevate and amplify the vital message and get rare families the visibility and support they so desperately need.
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<div><strong>WHAT ARE WE TRYING TO DO?</strong>
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<div><strong>A RARE LIFE | Dark Comedy/Drama | Feature Film (90 minutes approx.) | Subjects/Themes: rare disease awareness, men's mental health, bereavement, &amp; family dynamics</strong>
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<div>This story follows a recently bereaved husband who is struggling to come to terms with his wife’s death and the reality that his young daughter may also be affected by the same rare condition.
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<div>The “diagnostic odyssey” will be well known to patients, family members and advocates of those in the rare disease space...it's the concept of the long road to rare disease discovery and diagnosis…often times, unfortunately, only after a lot of challenges. Too little is known about most rare conditions, which in turn often means limited funding and access to suitable therapies and treatments. This can change for the better with this film… I truly believe that!
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<div>By creating this film in a long form, as opposed to a short, we can navigate more complex story threads and create far more engrossing characters that will resonate in a stronger way with audiences. The stylistic choice to mix comedy with drama, in a tone similar to Ricky Gervais’ After Life with some more surreal elements, means we can further engage the viewer and navigate these difficult issues without having them “switch off”, both figuratively and literally.
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<div>With limited funding** things will certainly be tight (consider other low budget faves for comparison; Monty Python and The Holy Grail (£282, 635), Napoleon Dynamite (£400K), Withnail &amp; I (£1.2M) - the list goes on!) but by working with a small and dynamic North East team I know that this is something which can be achieved if we keep our goal in sight, which is simply to support and empower the rare disease community.
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<div>Thank you for reading and for any support that you can give, little or large. Even if it just a share on social media it is hugely appreciated and may help this dream become a reality!
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<div><em>**To be absolutely clear I will not be taking a fee for my services in the development of this film, and creating it alongside NPUK and the wider NPD/rare community. </em>
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<div><strong>*I'll pop just a few examples of the shorts we have developed in recent years, which were all developed with limited budgets. It is my belief that with your kind support and the right creative team behind us we can replicate this on a bigger scale and finally put both the rare disease community and men's mental health centre stage where they both deserve to be!</strong>
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<div><strong>A Rare Find </strong>| Newborn Screening Collaborative | Narrated by Robert Webb &amp; Starring Jack Robertson and Chantelle &amp; Cora Lily Taggart | 2023
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<div class="youtube-replace"><a href="https://www.youtube.com/watch?v=oVKBVERBULc" target="_blank" rel="noreferrer noopener"><a href="https://www.youtube.com/watch?v=oVKBVERBULc" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.youtube.com/watch?v=oVKBVERBULc</a></a>
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<div><strong>Invisible Manners </strong>| Niemann-Pick UK &amp; Friends | Narrated by Billy Boyd, Isy Suttie, Weruche Opia &amp; rare disease community | 2021
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<div class="youtube-replace"><a href="https://www.youtube.com/watch?v=A1QmA_HK7e4" target="_blank" rel="noreferrer noopener"><a href="https://www.youtube.com/watch?v=A1QmA_HK7e4" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.youtube.com/watch?v=A1QmA_HK7e4</a></a>
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<div><strong>Go Make Memories</strong> | Niemann-Pick UK | Directed by Carl Mason | 2019
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<div class="youtube-replace"><a href="https://www.youtube.com/watch?v=H_y4jBUPm80" target="_blank" rel="noreferrer noopener"><a href="https://www.youtube.com/watch?v=H_y4jBUPm80" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.youtube.com/watch?v=H_y4jBUPm80</a></a>
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<div><em>Please follow along our journey as we make this dream become a reality! Feel free to also get in touch with me by [email redacted].Taggart and by email at: 074555 415 75</em>
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Gail Koujaian

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A Rare Life - Crowdfunded Feature Film - Awareness

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A Rare Life - Crowdfunded Feature Film - Awareness

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