Related: Rare Disease Day: Family tell of vital support for rare genetic condition
A UN resolution on rare diseases that was adopted in December could help create opportunities for people living with uncommon medical conditions.
Government officials and non-profit organisations celebrated the resolution on Rare Disease Day — February 28 — during an event at Expo 2020 Dubai.
More than 7,000 rare diseases that have been identified so far and these affect about 400 million people globally. Seventy-two per cent of these illnesses are genetic and an estimated 7.8 million people in the Middle East live with a rare disease today — three quarters of them are children.
However, there had been little visibility for people with rare diseases, including a lack of public awareness that resulted in greater risk of social exclusion and many forms of discrimination.
executive director, Rare Diseases International
It is hoped that the resolution, that passed with support from all 193 members of the UN General Assembly, will help create global and national-level policies to help people suffering from rare illnesses such as muscular dystrophies or Huntington’s disease.
“Getting the UN resolution really gave an impetus and gave a lot of energy to national patient groups to go to their own policymakers and put rare diseases on the table,” said Flaminia Macchia, executive director of Rare Diseases International.
“It also further connected the international movement to work together towards a major common goal and we do feel that we feel closer.
“It gives immediate global visibility to an invisible population. It also means that the challenges of this population are now also visible and recognised."
Ms Macchia said the next steps involve moving towards social justice and equity, including access to education, and finding and maintaining work.
She said women with rare diseases are especially discriminated against, and that there needs to be gender equality.
“Women are disproportionately discriminated against and stigmatised,” she said.
The resolution also addresses solutions such as strengthening healthcare systems, international networks and collaboration.
Ms Macchia said that the UN resolution would help drive global and local change in healthcare systems.
“Stronger healthcare systems will better support universal health coverage for rare diseases. For this very specific health-related aspect, we will work closely with the World Health Organisation," she said.
“The resolution empowers us as a community and opens the door towards other UN bodies, agencies and programmes in order to truly address rare diseases holistically.”
Dr Maryam Matar, founder and chairwoman of the UAE Genetic Diseases Association, said that until the group was formed in 2004, there were no organisations in the Emirates to help people with rare diseases.
Since then, the UAE has made many strides in helping people of determination, especially those with rare diseases, including legislation that makes it illegal to discriminate against patients.
“At that time, there was not a single organisation where the patient and their family could come forward and talk about it,” she said.
“So, we started with some common genetic diseases like hemoglobinopathies, and specifically glucose-6-phosphate dehydrogenase, thalassaemia and sickle-cell anaemia.”
She said they carried out public awareness campaigns about availability, accessibility and affordable diagnoses, management and treatment.
The event at Expo 2020 Dubai involved a parade, musical performances and a speech — all aimed at boosting awareness about rare diseases.
Al Wasl Dome was also lit up with blue, green, pink, and purple lights, the official colours of Rare Disease Day.
Coldplay perform at Expo - in pictures
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Coldplay performs at Expo 2020 Dubai on February 15. All photos: Reuters, unless noted otherwise -
Chris Martin and crew rocked Al Wasl Dome as part of the Infinite Nights concert series. -
Kicking off the gig right on time at 9pm, Coldplay launched directly into 'Higher Power', the uplifting hit from their ninth and latest album 'Music of the Spheres'. -
As part of the concert, the 'sky' of Al Wasl Dome also teemed with butterflies, rainbows and oversized BTS holograms. -
Al Wasl Dome came alive with laser projections and holograms as part of the concert. -
Chris Martin went around the circular stage a number of times, greeting the audience. -
Despite the smaller crowd, Chris Martin’s energy was infectious as he stomped back and forth between the centre stage and the outer circles. -
Chris Martin of the band Coldplay performs at Expo 2020 Dubai. -
Coldplay played several hits including 'Paradise' — performed under a kaleidoscope of butterflies and rainbows. Photo: Expo 2020 Dubai -
Chris Martin takes a seat at the piano to croon along to a song. -
Chris Martin was at his best, traipsing around the stage and pulling electrifying poses as he swung his arms and pointed his fingers. -
Guitarist Jonny Buckland, bassist Guy Berryman and drummer Will Champion provided a solid support team to lead vocalist Chris Martin for the night. -
With more than 100 million albums sold worldwide, Coldplay are one of the most successful bands of the 21st century and one of the bestselling music acts of all time. -
Typically found headlining stadiums around the world with upwards of 100,000 fans, it was a rather intimate affair at Expo 2020 Dubai. -
Chris Martin and Jonny Buckland of Coldplay perform at Expo 2020 Dubai.
