Fide Mirón was diagnosed at around six months old with Congenital Erythropoietic Porphyria, also known as Günther disease — an extremely rare genetic disorder.

Growing up meant dealing with painful wounds, infections and severe anemia. Fide has spoken openly about how the condition affected her hands and facial appearance. For years, she also required regular blood transfusions, with her father donating blood for her. 🥹

But Fide refused to let the disease silence her.

She studied Social Work and eventually transformed her personal experience into advocacy for people living with rare diseases and disabilities. ❤️

Today, she serves as president of the Spanish Porphyria ᴀssociation and vice president of FEDER, the Spanish Rare Diseases Federation.

Her work focuses on helping patients find support, raising awareness of rare conditions and encouraging scientific research that could lead to better treatments.

In 2026, Fide was also working toward creating an international network connecting people around the world who live with the same extremely rare form of porphyria.

❤️ Her condition changed her body, but Fide turned years of pain into a reason to make the journey easier for others.

Sometimes, the most powerful form of advocacy comes from someone who understands the struggle personally.

👉 Source: FEDER — Spanish Rare Diseases Federation