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Raising awareness and encouraging support on Rare Disease Day 2020

Rare Disease Day takes place on 29 February around the world

Rare Disease Day logo

Rare Disease Day aims to raise awareness about the impact of rare diseases among the general public and decision-makers alike.

Around one in 20 people will live with a rare disease at some point over the course of their life. Although rare diseases affect a significant portion of the population, most have no cure while many remain undiagnosed.

The day, which initially begun as a European event but has since become a world-wide phenomenon, has inspired a number of initiatives as well as spotlighting the need for increased awareness of, and research into, rare diseases.

Takeda UK, along with 13 rare disease patient groups from across the UK, launched the ‘I am number 17’ campaign to coincide with Rare Disease Day, with the aim to ‘help the voices of those with rare diseases be heard’.

To help spread the campaign’s message, 17 ‘changemakers’ were enlisted to share their stories of how rare disease has affected, and continues to impact, their day-to-day lives.

Each ‘changemaker’ shared their individual story through works of art, which were created in partnership with paired artists from across the country.

The initiative shines a light on the experiences of those living with rare conditions, from sickle cell disease and Ehler-Danlos syndrome, to hereditary angioedema and ataxia.

“I am number 17 is a community campaign at its heart, it’s also the first time that Takeda UK and a large collective of rare disease patient organisations representing multiple rare conditions are working together on one initiative,” said Jon Neal, managing director, Takeda UK & Ireland.

“Our joint goal is to increase understanding of what it’s like to live with a rare disease and show that collectively rare diseases aren’t always that rare,” he added.

One personal account for Rare Disease Day is a case study in which Dimitri Azzopardi explains what it is like to live with beta thalasseamia, a debilitating, life-long genetic blood disorder.

Reflecting the global reach of the day, the US Food and Drug Administration held a public meeting on 24 February to coincide with Rare Disease Day, and also announced three new actions to support the development of new treatments and support for those living with rare diseases.

These include:

  1. New requests for applications for the Orphan Products Grants programme, which supports natural history studies and clinical trials for rare diseases
  2. Additional information on orphan ‘exclusivity protected uses’ – this will make information about orphan drug designations and differences between an approved indication and the exclusivity protected indication clearer for patients, providers and drug developers
  3. An enhanced rare disease patient website to help patients and their families better navigate the FDA’s organisation and its offices supporting the rare disease space.

Rare Disease UK also hosted the first ever UK film festival dedicated to raising awareness of rare diseases on 10 February.

The national campaign, run by Genetic Alliance UK, invited its supporters, including patient organisations, industry partners, communication agencies and individual supporters, to submit short films around the theme of rare disease.

The aim was to raise awareness of rare disease in an impactful way by showing people’s stories through the medium of film.

“Raising awareness is central to our mission to improve outcomes for people affected by rare diseases. The festival was born from the recognition of the power that films have to shape the way in which we view the world,” said Jayne Spink, Genetic Alliance UK CEO.

To watch all the shortlisted films and cast a vote, visit the Rare Film Festival website. The winner of the People’s Choice Award will be announced on Saturday 29 February to coincide with Rare Disease Day.

For more information on Rare Disease Day, visit rarediseaseday.org

Article by
Lucy Parsons

28th February 2020

From: Healthcare

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