Achondroplasia South Africa Community Page

17/10/2026

17/10/2026

14/10/2026

03/10/2026

One of the greatest strengths of any rare-disease community is sharing knowledge.

When families, clinicians, therapists, researchers and advocates share reliable information, we all become better equipped to understand care, ask the right questions, recognise important medical concerns and support one another.

For the achondroplasia and hypochondroplasia community, it is incredibly valuable to have an organisation such as the International Achondroplasia Forum (IAF), bringing together specialists, clinicians, researchers and patient representatives from around the world.

The 2026 International Achondroplasia Forum conference, held in Marseille in September, focused on shaping the future of care in achondroplasia and related conditions. It brought together international expertise around clinical care, research, emerging treatments and the challenges still facing individuals and families.

What makes the IAF particularly special is that so much of this knowledge is made available to the wider community through its resource library.

There are resources covering:

• care of babies and young children
• foramen magnum stenosis
• sleep and sleep-disordered breathing
• orthopaedic care
• adult care
• treatment and outcome measures
• research and publications
• conference presentations and educational materials

It is also wonderful to see the growing focus on hypochondroplasia, with new resources now available specifically for this condition, including information around diagnosis and FGFR3-related variants.

For families who would like to explore the more detailed clinical information:

International Achondroplasia Forum
https://achondroplasiaforum.com/

IAF Resource Library
https://achondroplasiaforum.com/resources/

2026 International Achondroplasia Forum Conference
https://achondroplasiaforum.com/congress/2/shaping-the-future-of-care-in-achondroplasia-and-related-conditions-2026

For parents who are newly diagnosed, or who simply want an easier and more straightforward place to start, Frederick’s Growth Fund has also developed a Parents’ Guide.

It brings together important information about achondroplasia in a format written specifically for families, including medical considerations, monitoring, care, treatment developments and links to further trusted resources.

Frederick’s Growth Fund
www.fgfnpo.org

Having access to organisations such as the International Achondroplasia Forum is an enormous asset to our community.

Rare conditions can sometimes make families feel as though they have to search for every piece of information themselves. The more we share credible resources and knowledge with one another, the easier that journey becomes for the family coming after us.

Please save this post and share these resources with other parents, doctors, therapists, teachers and anyone involved in the care of someone with achondroplasia or hypochondroplasia. 💚🇿🇦

Knowledge shared is knowledge multiplied.

26/07/2026

09/06/2026

What started as an effort to secure the best possible future for Frederick and children like him via access to pharmaceutical treatment, has evolved into a broader commitment to represent the achondroplasia community in South Africa. Through our advocacy work, we have identified a significant gap in...

05/06/2026

Community lets you understand that you are not the only one. You are not experiencing something no other mother/father or caregiver experienced

This post, with permission from Ashley, was a message that resonated with my heart at such a sacred level that I thought it apt to place it on our South African Community Page.

02/06/2026

Understanding the Pharmaceutical Treatment Landscape for Achondroplasia in South Africa

For decades, families affected by Achondroplasia have primarily relied on medical monitoring, surgeries and supportive interventions to manage complications associated with the condition.
Today, the landscape is changing.
For the first time in history, pharmaceutical treatments are emerging that aim to address the underlying biology of Achondroplasia — not only its complications.

Current treatment developments include:
🧬 Voxzogo® (vosoritide) – the first approved pharmaceutical treatment for Achondroplasia, designed to target the FGFR3 pathway involved in bone growth.
🧬 New and emerging therapies – including additional medicines currently being developed and studied internationally, reflecting rapidly advancing science in this space.

While these developments represent hope and progress, access remains a major challenge in South Africa due to regulatory pathways, cost, availability, awareness and funding barriers.

This page supports informed discussion, education, respectful dialogue and equitable access conversations around the evolving treatment landscape in South Africa.

Every family deserves access to information, choice, support and evidence-based care.

What questions or thoughts do you have about the changing treatment landscape for Achondroplasia?

31/05/2026

This is a community page supporting awareness, education, advocacy and discussion around the first ever pharmaceutical treatment developed for Achondroplasia and what this means for individuals and families in South Africa.

Please also feel free to reach out to Little People of South Africa.

For generations, families faced a reality where management options largely centred around monitoring, interventions and surgery. Today, for the first time, a pharmaceutical treatment exists — creating new conversations, new possibilities and new hope for many families.

This page exists for those who believe in:
✨ Access to treatment and informed medical choice
✨ Open, respectful, evidence-based discussion
✨ Sharing information, research, resources and treatment updates
✨ Supporting families navigating diagnosis, care and treatment decisions
✨ Advocating for improved access and awareness in South Africa
✨ Building a connected, informed and empowered community

This is not about telling anyone what choice to make.

It is about ensuring families and individuals have access to information, discussion, support and the right to explore all available options — including the first ever pharmaceutical treatment for Achondroplasia.

Whether you are a parent, adult with Achondroplasia, caregiver, healthcare professional or supporter — you are welcome here if you value respectful engagement and a commitment to better options, better information and a stronger future for our community.

18/05/2026

Welcome to Achondroplasia South Africa — a dedicated community platform for awareness, education, support, and advocacy.

Our goal is to connect South Africans impacted by achondroplasia, amplify lived experiences, share reliable information, and help foster greater understanding, inclusion, and opportunity.

This is more than a page — it is a growing community and a shared voice.
We’re grateful you’re here. 💚