Rare Disease Ghana Initiative has called on the government and stakeholders to address the challenges within the educational sector to create an all-inclusive environment.
Commemorating the World Rare Day on the theme, ‘Patient Centricity: Key to Achieving Universal Health and Inclusion’ the advocacy and engagement officer of Rare Disease Ghana Initiative, Esmeralda Arvo-Quardoo explained that most schools are not accessible to students with rare diseases due to infrastructure deficit, lack of teaching expertise, and learning materials.
She appealed to the government to invest in the educational sector to promote inclusive education.
“Most of the schools are not accessible to students. The environment is not conducive for students with rare diseases. The teachers don’t have the level of expertise to manage these persons. So when most persons with rare diseases realize that this is what they’re dealing with, they just shut down and be at home. So we are appealing to the government to make the educational system conducive to keep them”, she said.
With about 5% of Ghana’s population being people living with a rare disease, Miss Arvo-Quardoo added that establishing genetic testing centres will help Ghanaians get ‘quick access to diagnosis’ to manage ‘most rare diseases which are degenerative, genetic and not just disability’.
“We need the government to step in. Persons with rare diseases are few, and it is very expensive to manage, but we require them to step in, to at least support some families to run a genetic test to know the kind of condition they are dealing with. Some families go to the hospital, but the hospital can’t tell them what’s wrong with their ward.”
In a reassuring tone, she says developing a Rare Disease Policy will address challenges that persons with rare diseases face in Ghana.
“We want a working document, something that can hold them accountable,” she added.
Press Release
Today, 28 February 2022, is Rare Disease Day; the day dedicated to raising awareness for the 300 million people living with a rare disease around the world.
Across the globe, the rare disease community and its supporters are coming together today to share their colours and call for more equitable access to social opportunity, treatment and care for people living with a rare disease and their families.
Thousands of events including building illuminations, fundraisers, sporting events, scientific conferences, art exhibitions, policy events and much more are taking place today in over 100 countries! Take a look at the interactive world map of Rare Disease Day events.
As part of the Rare Disease Day 2022 campaign, we highlight the stories of 16 superheroes whose experiences represent many of the wider issues faced by the rare disease community. Although Vasco, Tshepiso, Nada, Jelena, Wafic and Taka live with different diseases and come from different countries, they have a shared passion for life, shared challenges and frustrations, and a shared drive for change. Watch, like, and share the Official Rare Disease Day video to hear their inspiring stories in 46 different languages.
Yann Le Cam, Chief Executive Officer at EURORDIS said:
“On this Rare Disease Day, let’s unite in green, blue, purple and pink to raise awareness and generate change for the 300 million people living with a rare disease, their families and carers worldwide and the 30 million in Europe. Join us in the Global Chain of Lights, organise events in your community and get your message out on social media with the materials we’ve prepared together with you. Over the last 13 years, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, multicultural, and multi-lingual, but united in purpose.”
Flaminia Macchia, Executive Director at Rare Diseases International said:
“For Rare Diseases International and the global rare disease community, Rare Disease Day 2022 is a moment to celebrate the momentous achievement of the first-ever UN Resolution on Persons Living with a Rare Disease and their Families. It is also an opportunity to come together to chart a roadmap to ensure the UN and its Member States keep the promise to Leave No One Behind.”