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Strategic Partnership for Rare Disease Innovation:

Brokered a groundbreaking partnership between a North American-based patient Advocacy Network and the only purely Health Science Academic Institution in  South Africa.

• As a result, we created the blueprint for a Rare Disease Centre of Excellence (RD CoE) focused on diagnosis, multidisciplinary patient care, clinical trials, therapeutic drug development and innovative collaborative research.

• We have been instrumental in conducting gap analysis, recruiting steering committee members, identifying clinical trials to focus on, and coordinating core clinical and fundraising strategies to accelerate operationalizing the CoE

  
  

Experienced in leading Public Health programs, including:

• Social mobilization, key stakeholder and media engagement to enhance communication strategies for School Health and vaccine initiatives under the auspices of GAVI, and UNICEF

• Implementation of Sexual/Reproductive Health Programs in Level 5 Hospitals in Kenya.

Enhancing Clinical Trial Diversity (KnowRare)

• Led initiatives to increase diversity in rare disease clinical trial recruitment in collaboration with Pharmaceutical Sponsors and CROs.

• Streamlined recruitment using an AI-enabled pre-screening platform and cultivated relationships with key advocates such as the Rare Disease Diversity Coalition (RDDC) and Rare Advocacy Movement (RAM).

• Played a key role in simplifying patient consent forms and translating clinical trial processes into patient-friendly tools and resources, enhancing education and advocacy.

• Increased pre-screened patient enrollment through targeted health education and marketing campaigns.