Ntsoaki Motaung
Nthabeleng Ramoeli, the Chief Executive Officer of the Rare Disease Lesotho Association, emphasised that the most significant initiative for the rare disease community is to ensure their voices are heard and acknowledged.
Ramoeli made these remarks while speaking as a panellist during the World Health Assembly Resolution Webinar on rare diseases held last week.
“Just being heard can go a long way because most people with rare diseases are lying at home being told they are hypochondriacs,” she explained. She stressed that individuals with rare diseases deserve to be taken as seriously as those with pandemics, as they also require special attention.
Ramoeli pointed out that timely diagnosis is crucial for those living with rare diseases, highlighting the delays many experience.
“If people are taken seriously, they will get diagnosed in time. Currently, it can take 10 to 15 years to receive a diagnosis, and in that time, some individuals pass away without ever knowing what they were suffering from,” she said.
She also acknowledged the difficulty in addressing the topic of rare diseases, especially in situations where individuals die without a diagnosis. “It’s a tough topic to confront, but that is the reality we live with every single day, and as a community, we have to deal with it.”
Dr. Ruediger Krech, Director of Health Promotion at the World Health Organization (WHO), underscored the global scale of the issue, noting that more than 300 million people suffer from rare diseases worldwide.
Dr. Krech emphasised that behind each person is a family and a story that often involves a lengthy journey to diagnosis, which can take over seven years. “Health systems are often not adapted to rare diseases, and there is little public health policy addressing their specific needs,” he said.
He called for greater awareness, international cooperation, and knowledge sharing to better address the needs of the rare disease community.
James Anderson, Executive Director of Global Health at the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), reaffirmed the commitment of pharmaceutical associations to collaborate with WHO, patients, and clinical groups.
Anderson highlighted the importance of co-creating solutions to the challenges faced by the rare disease community and improving the understanding of the pathogenesis of these diseases.
He also stressed the need for enhancing newborn screening and utilizing diagnostic technologies, calling them critical first steps in tackling rare diseases.Kay
Advocacy for rare diseases: “Being heard is the first step”
Ntsoaki Motaung
Nthabeleng Ramoeli, the Chief Executive Officer of the Rare Disease Lesotho Association, emphasised that the most significant initiative for the rare disease community is to ensure their voices are heard and acknowledged.
Ramoeli made these remarks while speaking as a panellist during the World Health Assembly Resolution Webinar on rare diseases held last week.
“Just being heard can go a long way because most people with rare diseases are lying at home being told they are hypochondriacs,” she explained. She stressed that individuals with rare diseases deserve to be taken as seriously as those with pandemics, as they also require special attention.
Ramoeli pointed out that timely diagnosis is crucial for those living with rare diseases, highlighting the delays many experience.
“If people are taken seriously, they will get diagnosed in time. Currently, it can take 10 to 15 years to receive a diagnosis, and in that time, some individuals pass away without ever knowing what they were suffering from,” she said.
She also acknowledged the difficulty in addressing the topic of rare diseases, especially in situations where individuals die without a diagnosis. “It’s a tough topic to confront, but that is the reality we live with every single day, and as a community, we have to deal with it.”
Dr. Ruediger Krech, Director of Health Promotion at the World Health Organization (WHO), underscored the global scale of the issue, noting that more than 300 million people suffer from rare diseases worldwide.
Dr. Krech emphasised that behind each person is a family and a story that often involves a lengthy journey to diagnosis, which can take over seven years. “Health systems are often not adapted to rare diseases, and there is little public health policy addressing their specific needs,” he said.
He called for greater awareness, international cooperation, and knowledge sharing to better address the needs of the rare disease community.
James Anderson, Executive Director of Global Health at the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), reaffirmed the commitment of pharmaceutical associations to collaborate with WHO, patients, and clinical groups.
Anderson highlighted the importance of co-creating solutions to the challenges faced by the rare disease community and improving the understanding of the pathogenesis of these diseases.
He also stressed the need for enhancing newborn screening and utilizing diagnostic technologies, calling them critical first steps in tackling rare diseases.Kay
Advocacy for rare diseases: “Being heard is the first step”
Ntsoaki Motaung
Nthabeleng Ramoeli, the Chief Executive Officer of the Rare Disease Lesotho Association, emphasised that the most significant initiative for the rare disease community is to ensure their voices are heard and acknowledged.
Ramoeli made these remarks while speaking as a panellist during the World Health Assembly Resolution Webinar on rare diseases held last week.
“Just being heard can go a long way because most people with rare diseases are lying at home being told they are hypochondriacs,” she explained. She stressed that individuals with rare diseases deserve to be taken as seriously as those with pandemics, as they also require special attention.
Ramoeli pointed out that timely diagnosis is crucial for those living with rare diseases, highlighting the delays many experience.
“If people are taken seriously, they will get diagnosed in time. Currently, it can take 10 to 15 years to receive a diagnosis, and in that time, some individuals pass away without ever knowing what they were suffering from,” she said.
She also acknowledged the difficulty in addressing the topic of rare diseases, especially in situations where individuals die without a diagnosis. “It’s a tough topic to confront, but that is the reality we live with every single day, and as a community, we have to deal with it.”
Dr. Ruediger Krech, Director of Health Promotion at the World Health Organization (WHO), underscored the global scale of the issue, noting that more than 300 million people suffer from rare diseases worldwide.
Dr. Krech emphasised that behind each person is a family and a story that often involves a lengthy journey to diagnosis, which can take over seven years. “Health systems are often not adapted to rare diseases, and there is little public health policy addressing their specific needs,” he said.
He called for greater awareness, international cooperation, and knowledge sharing to better address the needs of the rare disease community.
James Anderson, Executive Director of Global Health at the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), reaffirmed the commitment of pharmaceutical associations to collaborate with WHO, patients, and clinical groups.
Anderson highlighted the importance of co-creating solutions to the challenges faced by the rare disease community and improving the understanding of the pathogenesis of these diseases.
He also stressed the need for enhancing newborn screening and utilizing diagnostic technologies, calling them critical first steps in tackling rare diseases.Kay
Advocacy for rare diseases: “Being heard is the first step”
Ntsoaki Motaung
Nthabeleng Ramoeli, the Chief Executive Officer of the Rare Disease Lesotho Association, emphasised that the most significant initiative for the rare disease community is to ensure their voices are heard and acknowledged.
Ramoeli made these remarks while speaking as a panellist during the World Health Assembly Resolution Webinar on rare diseases held last week.
“Just being heard can go a long way because most people with rare diseases are lying at home being told they are hypochondriacs,” she explained. She stressed that individuals with rare diseases deserve to be taken as seriously as those with pandemics, as they also require special attention.
Ramoeli pointed out that timely diagnosis is crucial for those living with rare diseases, highlighting the delays many experience.
“If people are taken seriously, they will get diagnosed in time. Currently, it can take 10 to 15 years to receive a diagnosis, and in that time, some individuals pass away without ever knowing what they were suffering from,” she said.
She also acknowledged the difficulty in addressing the topic of rare diseases, especially in situations where individuals die without a diagnosis. “It’s a tough topic to confront, but that is the reality we live with every single day, and as a community, we have to deal with it.”
Dr. Ruediger Krech, Director of Health Promotion at the World Health Organization (WHO), underscored the global scale of the issue, noting that more than 300 million people suffer from rare diseases worldwide.
Dr. Krech emphasised that behind each person is a family and a story that often involves a lengthy journey to diagnosis, which can take over seven years. “Health systems are often not adapted to rare diseases, and there is little public health policy addressing their specific needs,” he said.
He called for greater awareness, international cooperation, and knowledge sharing to better address the needs of the rare disease community.
James Anderson, Executive Director of Global Health at the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), reaffirmed the commitment of pharmaceutical associations to collaborate with WHO, patients, and clinical groups.
Anderson highlighted the importance of co-creating solutions to the challenges faced by the rare disease community and improving the understanding of the pathogenesis of these diseases.
He also stressed the need for enhancing newborn screening and utilizing diagnostic technologies, calling them critical first steps in tackling rare diseases.
