The problem we solve: Why the need for an African Alliance for Rare Diseases: Africa as a continent remains the most vulnerable. Due to global issues such as poverty, hunger and limited financial stability, health issues have a high impact across the continent. The high presence of communicable diseases such as HIV/AIDS, Tuberculosis as well as the presence of Malaria create further access issues for those diagnosed and affected by rare conditions, as funds and resources are limited. Africa remains the continent with the most potential for rapid growth in the treatment of rare conditions. Due to the limited access currently available, many patients remain treatment naive which creates great interest for clinical trials. More than this, there is a far greater opportunity for industry investment due to the area being relatively untapped. Due to issues such as socio-economic development, limited access and limited resources, a united front needs to be adopted by the continent.
About our solution: To be a common voice for those affected by rare conditions across the continent and assist in progression recognition and access to treatment.Progress to date:The Alliance has been formed, and website developed, as well as terms of reference implemented.
Creator: Kelly du Plessis
Bio: I am a patient advocate based in South Africa, who advocates for access to treatment and supportive care for improved quality of life, for those impacted by Rare Diseases across Africa.
Hospital Affiliation: NPO
Title: Founder and CEO
This alliance will advance both recognition and the treatment of rare diseases across the continent, positively impacted millions of Africans.
Physicians and healthcare professionals will be supported in the ethical decision to treat their patients with rare diseases appropriately.
Hospitals and medical institutions will have access to best practises and shared knowledge on the treatment of rare diseases.
Industry stakeholders and partners will have the benefit of networking and developing policies directly related to improved access and treatment of orphan drugs and supportive care.
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