Government calls for support to address rare diseases

The Ministry of Health has asked for the collaboration of various stakeholders in the health sector to help contribute to the needs of rare disease patients in the country.

The Ministry in commemorating the Rare Disease Day, in a statement stated that, they “acknowledges the plight and challenges of persons living with rare disease and do hope that we can address their needs under the current National Health Policy which promotes equity, inclusion and collaboration among various stakeholders.”

In addition, the ministry said they are “currently working on strengthening our healthcare system to ensure that everyone has access to the necessary medical services, including those living with rare diseases”.

Read full statement below:

THE MINISTRY OF HEALTH PLEDGES FOR RARE ON RARE DISEASE 2023

The commemoration of Rare Disease Day presents an opportunity to highlight the plight of persons affected by this set of medical conditions. And, also to show solidarity with not only them, but the brave caregivers who have taken it upon themselves to endure the cultural and societal stigma that is unfortunately associated with persons suffering from Rare Diseases.

The Ministry of Health feels honored to be associated with the commemoration of Rare Disease Day and also with efforts made by individuals and organizations aimed at bettering the lot of persons with Rare Diseases.

The Ministry of Health acknowledges the plight and challenges of persons living with rare disease and do hope that we can address their needs under the current National Health Policy which promotes equity, inclusion and collaboration among various stakeholders.

Indeed, the National Health Policy is adequately themed “Ensuring Healthy Lives for All” and is in line with the central, transformative promise of the Sustainable Development Goals of “Leaving no one Behind”.

Rare disease affects millions of people around the world, with over 300 million individuals affected globally. It is estimated that rare diseases affect approximately 10% of the population. Thus a brief estimate would put the number of people affected by Rare Diseases in Ghana at a little over 3 million.
It is worth noting that many rare diseases are genetic in origin and affect mostly children, thus the stigmatization by other members of society is particularly hurtful.

Unfortunately, the majority of these people have limited access to proper diagnosis, treatment and care due to a lack of awareness and resources.

As a nation, we must work together to ensure that every person, no matter their medical condition, is granted the same level of dignity and access to healthcare. It is our responsibility to provide the necessary support, resources, and care to those living with rare diseases in Ghana.

We must continue to work towards developing strategies that will reduce the burden of rare diseases and promote their early detection.

The Ministry of Health wishes to bring to the attention of all persons living in Ghana that, our National Health Policy and Strategy for Universal Health Coverage is hinged on three (3)
Pillars:

1. Access – Ensuring that all persons living in Ghana can get healthcare no matter their location, gender, socioeconomic situation, culture, religion, etc.
   Quality – That the level of healthcare rendered at the village for the same health condition should be the same as that given in the cities
   3. Financial Risk Protection – That money, should not be a barrier to getting quality healthcare.

The Ministry of Health commends the Rare Disease Ghana Initiative for their incredible contributions to the Rare Disease sector in Ghana since their establishment in 2018, and we recognize and celebrate their remarkable efforts on this Rare Disease Day.

The Rare Disease Ghana Initiative is a National Non-Governmental Advocacy organization that has been working tirelessly to raise awareness and support for individuals and families affected by rare diseases in Ghana. Through their advocacy, the Rare Disease Ghana Initiative has been instrumental in bringing attention to the needs of those with rare diseases in our country.

Indeed, their efforts have led to the commencement of a Rare Disease Registry to provide essential data for the study of rare diseases in Ghana. This can be integrated with already existing health databases to provide comprehensive data and information for healthcare, including research. Additionally, Rare Disease Ghana Initiative has worked closely with healthcare providers to improve diagnosis, treatment and care for individuals with rare diseases.

We recognize that there is still much work to be done in the area of Rare Diseases and would like to assure the nation that we are committed to addressing the challenges faced by persons living with rare diseases in Ghana.

We are currently working on strengthening our healthcare system to ensure that everyone has access to the necessary medical services, including those living with rare diseases. We thus, urge all Stakeholders, including the Private Sector, Civil Society Organizations, and Corporate Ghana, to collaborate with Government to improve the lives of those living with rare diseases in Ghana.

We must work together to create a world where everyone, no matter their gender, socioeconomic situation, culture, religion or medical condition, has access to proper diagnosis, treatment, and care.

The Ministry of Health pledges for Rare!!!
…END…
Issued by:
Mark Atuahene
Acting Head, Health and Health Promotion
Ministry of Health