All posts by : Tshegofatso Thobane

“What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others.” — Nelson Mandela 

Every year on the 18th of July, South Africans and global citizens unite in action to commemorate the legacy of Mr. Nelson Rolihlahla Mandela. Mandela Day is not just a celebration of his birthday, but it is a call to action for people everywhere to dedicate 67 minutes of their time to making a positive impact in their communities, reflecting the 67 years Madiba spent fighting for social justice in South Africa. 

Mandela Day holds a deeply resonant meaning. It is a reminder of our responsibility to contribute toward continuous improvement of patient’s quality of life through research and development, ensuring that the benefits of science and research reach those who have historically been left behind. This year, CRISMO reaffirms its commitment to accelerate scientific research through provision of research infrastructure.

Living the Legacy in Clinical Research :

South Africa’s clinical research landscape is rich in potential, yet often hampered by inequalities in access, infrastructure, and representation. It is important to create opportunities for inclusion, capacity-building, and ethical research that truly reflects the communities we serve. 

Mandela’s Legacy and Health Equity :

Nelson Mandela once said, “Health cannot be a question of income. It is a fundamental human right.” In a country where public health facilities carry the burden of care for the majority, access to clinical trials must be democratised. This includes bringing research closer to where people live, involving them as partners in the process, and ensuring the results lead to improved services and treatments for all. 

Looking Ahead: Building Systems for NHI Readiness:

As South Africa prepares for the implementation of the National Health Insurance (NHI), CRISMO recognizes that inclusive clinical research is a cornerstone for an effective and evidence-based healthcare system. In line with Mandela’s vision of dignity and equity, CRISMO will continue to drive site development, workforce empowerment, and policy engagement, contributing to a healthcare future that is sustainable, innovative, and just. 

This Mandela Day, CRISMO calls upon all stakeholders’ research institutions, sponsors, government partners, and communities to join in creating a healthcare system that leaves no one behind. 

References/Sources to consider:  

1. Nelson Mandela Foundation. (2025). Mandela Day 2025 Toolkit. Retrieved from: https://www.nelsonmandela.org/ 

2. World Health Organization. (2023). Equity in health care and the role of research. Retrieved from: https://www.who.int/ 

3. National Department of Health South Africa. (2022). National Health Insurance White Paper. Retrieved from: https://www.health.gov.za/ 

4. Madiba, N.R. (2004). Address to the 15th International AIDS Conference, Bangkok. UNAIDS Archives. 

Introduction: 
Rare Disease Day, observed annually on the last day of February, serves as a crucial global initiative to raise awareness about rare diseases and their impact on patients, families, and healthcare systems. With over 300 million people worldwide living with a rare disease, this day fosters advocacy for improved research, diagnosis, treatment, and healthcare policies. 

Understanding Rare Diseases: 

A disease is classified as rare when it affects fewer than 1 in 2,000 people. However, despite their individual rarity, there are over 7,000 known rare diseases, collectively affecting a significant portion of the global population. Many of these conditions are genetic, chronic, and life-threatening, often lacking adequate research, treatment options, or even a clear diagnostic pathway. 

Challenges Faced by Rare Disease Patients: 

Patients with rare diseases often encounter numerous barriers in accessing proper healthcare services. These challenges include: 

• Delayed or Misdiagnosis: Due to the rarity and complexity of symptoms, many patients go undiagnosed or receive incorrect diagnoses, sometimes for years. 

• Limited Treatment Options: Only a small fraction of rare diseases has approved treatments, leaving many patients with palliative care as their only option. 

• High Cost of Care: The financial burden of rare diseases is significant, as specialized treatments, ongoing medical consultations, and support services often come at an exorbitant cost. 

• Limited Research and Awareness: Rare diseases receive less research funding compared to more prevalent conditions, resulting in slower advancements in diagnostics and therapeutics. 

CRISMO’s Commitment to Rare Disease Research and Clinical Trials 

At CRISMO, we recognize the importance of supporting rare disease research and providing accessible clinical trial opportunities. As a Clinical Research Investigator Site Management Organization (SMO), CRISMO is committed to: 

• Facilitating Clinical Trials: We collaborate with pharmaceutical companies, contract research organizations (CROs), and academic institutions to bring innovative trials to communities in need. 

• Advocating for Inclusion in Research: We support the inclusion of diverse populations in clinical research to ensure rare disease studies reflect the realities of those affected in various regions, including underrepresented communities. 

• Enhancing Access to Experimental Therapies: Through our clinical research network, we aim to connect patients with potential treatment options that would otherwise be unavailable in standard healthcare settings. 

• Promoting Awareness and Education: By engaging healthcare providers, policymakers, and the public, we work to improve understanding and reduce stigma around rare diseases. 

The Importance of Global Collaboration 

Rare Disease Day highlights the significance of collaboration among researchers, healthcare professionals, patient advocacy groups, and regulatory bodies. Organizations such as EURORDIS (Rare Diseases Europe) and the National Organization for Rare Disorders (NORD) continue to push for policies that prioritize rare disease patients, ensuring they receive the attention and care they deserve. 

Conclusion 
Rare Disease Day is more than just an observance—it is a call to action. CRISMO remains dedicated to advancing research, improving access to care, and fostering hope for individuals affected by rare diseases. By working together, we can drive progress towards better treatments, policy reforms, and ultimately, a brighter future for rare disease patients worldwide. 

References/Sources to consider: 

• EURORDIS – Rare Diseases Europe: https://www.eurordis.org/ 

• National Organization for Rare Disorders (NORD): https://rarediseases.org/ 

• World Health Organization: https://www.who.int/health-topics/rare-diseases 

Introduction: 

Sexual and Reproductive Health Awareness Day serves as a vital reminder of the importance of comprehensive health education, accessible services, and proactive measures to maintain and enhance reproductive well-being. Observed annually, this day emphasizes the need for individuals and communities to engage in informed discussions and practices that support sexual and reproductive health. 

Understanding Sexual and Reproductive Health: 

Sexual and reproductive health encompasses a wide range of issues, including family planning, prevention and treatment of sexually transmitted infections (STIs), maternal health, and access to safe and effective contraceptive methods. It is essential for individuals to have access to accurate information and quality services to make informed decisions about their health. 

Voluntary Medical Male Circumcision (VMMC) and HIV Prevention: 

One significant intervention in the realm of sexual and reproductive health is Voluntary Medical Male Circumcision (VMMC). Research has demonstrated that VMMC can reduce the risk of heterosexual men acquiring HIV by approximately 60%. This preventive measure has been endorsed by the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) since 2007. 

In South Africa, VMMC has been a key component of HIV prevention strategies. Programs have been implemented to provide safe and accessible circumcision services, contributing to the reduction of new HIV infections. 

CRISMO’s Contribution to HIV and STI Prevention: 

The Clinical Research Investigator Site Management Organization (CRISMO) has been actively involved in promoting sexual and reproductive health through various initiatives. Notably, CRISMO operates a Voluntary Medical Male Circumcision program aimed at contributing to the prevention of HIV and other STIs. To date, CRISMO has successfully assisted over 200 males in and around Ekurhuleni with this program, providing safe and professional services to enhance community health. 

Aligned with its mission, CRISMO is dedicated to contributing toward the continuous improvement of patients’ quality of life through research and development. By integrating evidence-based practices and innovative research into community health initiatives, CRISMO remains committed to fostering better health outcomes for all. 

The Importance of Awareness and Education: 

Raising awareness about sexual and reproductive health is crucial for empowering individuals to make informed choices. Educational initiatives can dispel myths, reduce stigma, and encourage the adoption of preventive measures. Observances like Sexual and Reproductive Health Awareness Day play a pivotal role in highlighting these issues and mobilizing communities to act. 

Conclusion: 

Sexual and Reproductive Health Awareness Day is an opportunity to reflect on the progress made and the challenges that remain in ensuring comprehensive health services for all. Through continued education, accessible services, and community engagement, we can work towards a future where everyone has the resources and knowledge to maintain their sexual and reproductive health. CRISMO remains committed to advancing research, development, and healthcare solutions that improve patient quality of life and promote overall well-being. 

References/Sources to consider: 

• World Health Organization. “Voluntary medical male circumcision for HIV prevention.” https://www.who.int/teams/global-hiv-hepatitis-and-stis-programmes/hiv/prevention/voluntary-medical-male-circumcision 

• PubMed. “Voluntary medical male circumcision in selected provinces in South Africa.” https://pubmed.ncbi.nlm.nih.gov/36149904/ 

• Cape Fertility. “February is Reproductive Health Month in South Africa.” https://capefertility.co.za/february-is-reproductive-health-month-in-south-africa/ 

• National Department of Health, South Africa. “Contraception and Family Planning.” https://www.health.gov.za/wp-content/uploads/2020/11/2020-booklet-contraception-and-family-planning.pdf 

• World Health Organization Regional Office for Africa. “Sexual and Reproductive Health.” https://www.afro.who.int/health-topics/sexual-and-reproductive-health