What is rare in rare? #3 LAL-D Patient Organization
In the EU, a rare disease is defined as one that affects fewer than 5 out of every 10.000 people in the general population. However, being “rare” is not just a medical term; it reflects a lived experience filled with constant challenges, sacrifices, and an extraordinary strength that comes from being part of a community. It involves living with a condition that many may not understand, yet still finding the resilience to move forward.
The 3-word response from our partner patient LAL-D Patient Organization to “What is rare in rare?” was: Resilience. Hope. Unity.
“Resilience” is the ability to adapt and keep moving forward despite daily challenges, such as frequent treatments, the emotional and work-related impact, and lack of resources.
“Hope” is rooted in trust in research: research that strives to improve quality of life through more convenient treatments, neonatal screening, and genetic counselling, while opening the door to better options for the future.
“Unity” is the power of coming together – connecting patients, families, and professionals across geographical and cultural boundaries to raise awareness, drive change, and ensure that no one faces this journey alone.
