Rare Disease Day: The Role of Movement and Exercise in Living Well

Rare Disease Day is recognised globally to raise awareness of the challenges faced by people living with a rare disease. While individual conditions may be uncommon, rare diseases collectively affect around 1 in 20 people worldwide, with many conditions being lifelong, complex, and without a cure.¹

People living with rare diseases often experience symptoms such as fatigue, muscle weakness, pain, mobility changes, and decreased endurance. These challenges can significantly impact daily activities, independence, and quality of life.

Why movement matters

For many people with rare conditions, appropriate movement and physical activity can play a valuable role in maintaining function and overall wellbeing. Research consistently shows that regular, tailored exercise can help to:

• Preserve muscle strength and joint mobility

• Support cardiovascular and respiratory health

• Reduce fatigue and deconditioning

• Improve balance, confidence, and functional capacity

• Positively influence mental health and quality of life

  
  

Importantly, exercise does not need to be intense or high-volume to be beneficial. Gentle, structured movement—adjusted to an individual’s abilities and symptoms—can still provide meaningful health benefits.²

Exercising safely with a rare condition

Because rare diseases vary widely in how they affect the body, exercise often needs to be individualised and adaptable. Symptoms may fluctuate, and some conditions require careful consideration of fatigue, pain levels, or disease progression.

This is where support from qualified health professionals, such as Accredited Exercise Physiologists, may be helpful. Exercise Physiologists are trained to work with people who have complex medical conditions, providing guidance on safe, evidence-based exercise tailored to individual needs and goals. Their role is to support participation in movement while minimising risk and adapting programs as needed.

A focus on quality of life

Living with a rare disease can be unpredictable and isolating. A flexible, person-centred approach to movement can help individuals stay engaged in daily life, maintain independence, and feel more confident in their bodies.

On Rare Disease Day, we recognise that while there may not always be clear treatment pathways, supportive strategies—such as appropriate physical activity—can play an important role in improving function and wellbeing for people living with rare conditions.

References

1. Rare Diseases International. Global impact of rare diseases.

2. World Health Organization (2020). WHO Guidelines on Physical Activity and Sedentary Behaviour.

3. Orphanet. Rare diseases: understanding this public health priority.

4. Pedersen BK, Saltin B. (2015). Exercise as medicine – evidence for prescribing exercise as therapy. Scandinavian Journal of Medicine & Science in Sports.