Rare Disease

Ghana has joined the world to mark this year’s 2021 Global Rare Disease Day which falls on the 28th of February every year.

On Sunday 28th February 2021, a symbolic observation of the 2021 edition of the Rare Disease Day, saw the lighting up of the Kwame Nkrumah Mausoleum, a national monument performed by the Rare Disease Ghana Initiative team.

The Lighting Up displayed the colours of the Rare Disease Day campaign.

Globally, Rare Disease Day is held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

In Ghana, the Rare Disease Day 2021 which is on the theme “Achieving Universal Health Through Equity,” is organized by the Rare Disease Ghana Initiative with the support of Takeda (a pharmaceutical company that makes products for rare diseases) and 54Gene (a biotech focused on equalizing precision medicine by including underrepresented Africans in global genomic research and Ghana’s 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. The Rare Disease Day 2021, this year is the 14th observance on the global stage.

In an interview with the Executive Director of Rare Disease Ghana Initiative, a Non-Governmental Organisation, Mr. Samuel Agyei Wiafe, stated that more than 107 countries participate in this event every year.

Mr. Samuel Agyei also doubles as a Clinical Psychologist and has a very rich experience and knowledge in his field.

“Rare Disease Ghana has been spearheading this campaign since 2018 and so we gathered here to observe the day. The campaign is meant to raise more awareness and further work towards inclusion into our health system to boost universal health.

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…We are lighting up the Nkrumah Mausoleum into the Rare Disease Day colours and we are drawing attention to the need to prioritise health for Rare Diseases to be able to bring care to the people who need it. 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 lighting up at Kwame Nkrumah because we are also calling for liberation. This is because we want the Rare Disease Community to have the chance to live their full potential in life. That is one of the things Kwame Nkrumah believed so much and we also believe that we can do that.

He mentioned one significant milestone of Rare Disease Ghana Initiative where a 17-year-old boy with a rare case was offered a diagnosis for his predicament and has since been receiving treatment.

There were testimonies and appeals for support from some beneficiaries of Rare Disease Ghana Initiative and victims of Rare Diseases.

Rare Disease Ghana, in addition, will also host a virtual symposium on March 17th, 2021 as part of lined-up activities.

The goal of the symposium is to improve knowledge and awareness of congenital anomalies, genetic and rare diseases among health workers, researchers, policymakers, and the general public.

The symposium is CPD-accredited to medical professionals especially Doctors who attend.

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