Raising awareness, sharing hope
The Namibian Alliance for Rare Diseases aims to bring rare diseases in the country to the fore, by taking hands with relevant stakeholders, creating awareness but also an platform for this affected to share their journey's and add a voice to a disease that is unknown to so many.
In this article Elizabeth Amalovu of Oshakati shares her journey with Lupus, Patricia De Klerk of Rehoboth sheds light on Takayasu Arteritis, we learn more about Anna from Ondangwa’s life with Scoliosis, while Corachia Ockhuizen’s made the pain from Myasthenia Gravis her purpose. Follow their page on Facebook: Namibian Alliance for Rare Diseases; [email protected], 081 142 3543
Did you know?
Children
Approximately 50% of patients affected by rare diseases are children, 30% will not live to see their fifth birthday.
STATS:
• If all people with rare diseases lived in one country, it would be the world’s third most populous country.
• 95% of rare diseases have no Food and Drug Administration-approved drug treatment.
• Many pediatric cancers make the list of rare diseases.
• The average time it takes for RD-patients to receive an accurate diagnosis is 4,8 years.
• 1 in 2 RD’s don’t have a foundation or research support group.
Did you know?
Children
Approximately 50% of patients affected by rare diseases are children, 30% will not live to see their fifth birthday.
STATS:
• If all people with rare diseases lived in one country, it would be the world’s third most populous country.
• 95% of rare diseases have no Food and Drug Administration-approved drug treatment.
• Many pediatric cancers make the list of rare diseases.
• The average time it takes for RD-patients to receive an accurate diagnosis is 4,8 years.
• 1 in 2 RD’s don’t have a foundation or research support group.
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