Rare Disease Awareness
Currently, there are over 300 million people living with a rare disease.1 Despite the heterogeneity and various definitions of rare disease across the world, it is universally acknowledged that rare disease patients often face a long pathway to a correct diagnosis and appropriate treatment.2 Spreading disease awareness is crucial for shortening the diagnosis journey and providing adequate support for those in need. Celebrating Rare Disease Day annually plays a significant role in acknowledging rare diseases;3 however, the different forms of media that surround us contribute massively to spreading awareness of rare diseases daily.
TV Series and Film
TV series such as Chicago Med, The Good Doctor, Grey’s Anatomy, and Dr. House are all popular for frequently featuring rare conditions, even though sometimes their accuracy might be questionable.4 A more accurate representation can be seen in the recently renewed Netflix series ‘Stranger Things’. Young actor Gaten Matarazzo put the limelight on cleidocranial dysplasia (CCD), a rare genetic disorder he was born with, which is marked by distinct and varied features such as sloping shoulders and dental abnormalities. Even though CCD has an estimated prevalence of only one in a million worldwide, online searches about the rare disorder increased by over 94% in the week of the season’s release, likely owing to the actor’s openness about the disease and how it affects his daily life outside the show.5 Another popular example is ‘The Big Sick’, a movie inspired by Emily V. Gordon’s real diagnosis of adult-onset Still’s disease, which can lead to major organs shutting down if left untreated. The screenplay, written by Gordon and her husband Kumail Nanjiani, was nominated for an Academy Award.4
Podcasts
The number of podcasts highlighting voices from the rare disease community is growing. ‘Once Upon a Gene’ is a podcast hosted by Effie Parks, who shares her story of having a child diagnosed with a rare neurodevelopmental disorder known as CTNNB1 syndrome.6 The podcast features interviews with fellow parents and doctors, and unique stories of people affected by rare disease. Another example of an inspirational podcast is ‘Two Disabled Dudes’, hosted by Kyle Bryant and Sean Baumstark, both affected by a neurodegenerative movement disorder known as Friedreich’s ataxia. They interview rare disease leaders, paralympic athletes, authors, and more, to discuss living beyond the challenges and dreaming big.7 The list of rare disease podcasts goes on and there is something for everyone, with podcasts featuring disease advocates, researchers, healthcare professionals, and different members of the rare disease community.8
Social Media
Social media facilitates finding a close-knit community which makes it a great tool to help patients come together, relate to each other, share their experiences, and realise they are not alone in their struggles. Sant Joan de Déu Research Foundation of Barcelona founded the Share4Rare project as the first social media network to connect and empower patients, caregivers, and researchers of rare diseases around the globe.9 Other organisations actively dedicated to helping individuals with rare diseases through social media include the National Organization for Rare Disorders and Rare Disease International.10,11 There are also many patients who, by sharing their personal rare disease experiences, have managed to build a trusted community with a high level of interactions acting as an antidote for a collective lack of understanding.
Conclusion
Patients affected by rare conditions will often have a long pathway to diagnosis, but raising disease awareness can help to shorten this pathway. Here at TVF, our medical and client services teams have a range of expertise in developing high-quality omnichannel campaigns including podcasts, social media posts, and many other disease awareness assets. If you would like to find out more about how we contribute and support, visit our website and get in touch.
By Hana Koscec
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