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Ghana has joined the world in commemorating this year’s World Rare Disease Day 2021, which is observed on February 28 each year.
On Sunday, February 28, 2021, a symbolic observation of the 2021 edition of Rare Disease Day, saw the lighting of the Kwame Nkrumah Mausoleum, a national monument made by the Ghana Rare Diseases Initiative team.
The Lighting Up showcased the colors of the Rare Disease Day campaign.
Globally, Rare Disease Day is celebrated to raise awareness of rare diseases and improve access to treatment and medical representation for people with rare diseases and their families.
In Ghana, Rare Disease Day 2021, whose theme is “Achieving Universal Health through Equity”, is organized by the Ghana Rare Disease Initiative with the support of Takeda (a pharmaceutical company that manufactures products for rare diseases) and 54 focused on matching precision medicine by including underrepresented Africans in global genomics research and the Ghana Ministry of Health.
This is the fourth time in a row that the event has been held in Ghana and it took the country 10 years to join the global crusade. Rare Disease Day 2021, this year is the fourteenth celebration on the world stage.
In an interview with the Executive Director of the Ghana Rare Diseases Initiative, a non-governmental organization, Mr. Samuel Agyei Wiafe, stated that more than 107 countries participate in this event every year.
Mr. Samuel Agyei is also a clinical psychologist and has extensive experience and knowledge in his field.
“Rare Diseases Ghana has been spearheading this campaign since 2018, so we are gathering here to celebrate the day. The campaign is meant to raise more awareness and work more towards inclusion in our health system to advance universal health.
“… We are lighting the Nkrumah Mausoleum in the colors of Rare Disease Day and we are drawing attention to the need to prioritize Rare Disease health in order to provide care to the people in need. We chose Kwame Nkrumah because Kwame Nkrumah means a lot to Ghanaians, as in the first president and the person who fought for independence and we are also fighting for the independence of the Rare Disease Community. We share a lot with Kwame Nkrumah. “
He added: “We are excited in Kwame Nkrumah because we are also calling for deliverance. This is because we want the Rare Disease Community to have the opportunity to live their full potential in life. That is one of the things that Kwame Nkrumah believed a lot. and we also believe that we can do that. “
He mentioned a significant milestone from the Ghana Initiative for Rare Diseases, where a 17-year-old boy with a rare case was offered a diagnosis of his situation and has been receiving treatment ever since.
There were testimonies and appeals for support from some beneficiaries of the Ghana Rare Diseases Initiative and victims of Rare Diseases.
Rare Disease Ghana will also host a virtual symposium on March 17, 2021 as part of the scheduled activities.
The aim of the symposium is to improve knowledge and awareness about congenital anomalies, genetic and rare diseases among healthcare workers, researchers, policy makers and the general public.
The symposium is CPD accredited for medical professionals, especially attending physicians.
Source: Peacefmonline.com
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