At the South African Cystic Fibrosis Association (SACFA), we are driven by a deep commitment to support, empower, and advocate for everyone affected by Cystic Fibrosis (CF) in South Africa. Through a blend of fundraising, patient advocacy, and a strong online presence, we strive to make a meaningful difference in the lives of patients and their families.

As a national body, SACFA serves the entire country, with the majority of patients we support based in Gauteng, Western Cape, Eastern Cape, Free State, and KwaZulu-Natal. While we do not have physical offices, our volunteer-run non-profit operates through a dedicated team of individuals who work remotely from their homes, balancing full-time jobs with their commitment to SACFA. Our committee members are located in Johannesburg, Sasolburg, Hilton, and Worcester, forming a passionate network united by a shared purpose.

Who We Serve and Why It Matters

SACFA exists for the people at the heart of the CF community: patients, parents, caregivers, and medical professionals. We are constantly inspired by the growing diversity of people reaching out for support, and we recognise the importance of engaging a broad spectrum of voices. We believe this ensures balanced information flows into the organisation, strengthens our advocacy, and helps us represent SACFA in conversations beyond just the immediate CF community.

That said, our core focus remains firmly on parents and patients. By dedicating most of our time and energy to them, we honour our mission to be a reliable, compassionate, and accessible source of support.

Meet Rida Viljoen & Annemarie Holtzhausen: Driving Patient Empowerment

At the forefront of SACFA’s patient support efforts is Rida Viljoen, our Patient Empowerment Manager. Rida’s commitment to the CF community is not just a role—it’s a calling she has embraced since her youth. As a Breakthrough Life Coach, she is passionate about helping individuals overcome personal limitations, nurturing resilience and hope within the CF community. She believes in the beauty of action and the transformative power of connection, and works to build a robust, inclusive support system where parents, patients, and healthcare professionals feel empowered.

Rida is supported by Annemarie Holtzhausen, who co-leads SACFA’s Clinic Guardians Initiative. Annemarie has been a transformative force on our cystic fibrosis committee since day one. Her thoughtful and reflective approach ensures that every word she shares is rich with insight and wisdom. With a quiet strength, she inspires us to listen deeply and consider the real-world impact of our actions on the CF community.

Annemarie’s passion for creating meaningful change has guided many of SACFA’s strategic decisions, particularly in our work with the public health sector. Her influence is a driving force behind the implementation of effective, compassionate systems, and her presence continues to be a beacon of hope and guidance for us all. We feel incredibly privileged to have someone of her calibre on our team.

Together, Rida and Annemarie are championing patient empowerment and frontline support, working side by side to ensure that patients and families are not only heard but actively uplifted.

Clinic Visit Report: Inkosi Albert Lithuli Community Hospital (IALCH)

In the second week of June (the 9th of June 2025), Rida visited the monthly CF clinic at Inkosi Albert Lithuli Community Hospital (IALCH). This helps us gain firsthand insight into the on-the-ground reality of public sector CF care. These visits are essential for assessing functionality, understanding patient experiences, and identifying areas for development.

Key Highlights from the Visit:

• The clinic runs on the first Tuesday of every month, operating on a first-come, first-served basis.

• Patients are reminded to collect their medical files at the front desk to avoid delays.

• Though retired, Dr. Thula remains actively involved, helping ensure consultations begin early.

• Despite ongoing stock issues, diagnostic capabilities at the hospital remain strong.

• Lung function testing is available for patients aged 8 years and older.

• Genetic counsellor Lisa Mbhele attended the clinic on request, highlighting a growing need for genetic support in CF care.

• The clinic team is proactive in following up with patients who miss appointments, reflecting their commitment to consistent care.

Rida’s visit reinforced SACFA’s belief in the power of presence, partnership, and patient-centred care. By showing up, listening, and documenting these experiences, we continue to advocate for improved healthcare delivery and access across South Africa.

Looking Ahead

SACFA remains deeply committed to:

• Empowering patients and parents

• Strengthening healthcare networks

• Advocating for critical resources

• Building bridges between communities and decision-makers

Every conversation, clinic visit, and shared story brings us one step closer to a better future for CF care in South Africa. Let’s keep the dialogue going- we welcome your insights, stories, and support.

 Please feel free to share your thoughts or questions in the comments – your voice matters. You can get in touch here.