Learning Without Labels: Why Education Systems Must Include Rare Diseases

On February 13, 2026, at 6:00 PM, a virtual session titled “Learning Without Labels: Why Education Systems Must Include Rare Diseases” was conducted on Google Meet. The keynote speaker was Dr. Ratna Devi, Director of the Patient Academy for Advocacy and Research and CEO & Founder of Dakshama Health and Education. The session focused on the importance of including rare disease awareness in the education system and creating more inclusive schools.

Dr. Ratna Devi explained that rare diseases may affect very few people individually, sometimes as rare as one in a million, but together they impact many families. She said that even though these diseases are uncommon, teachers and schools need to be aware of them. With proper academic support and emotional care, children with rare diseases can study in regular schools successfully. Teachers, especially in rural areas, can help identify early signs and guide families toward medical support.

She also spoke about delayed diagnosis. Many families are unable to recognize symptoms early because of low health awareness. Early diagnosis and acceptance are important, as timely treatment can improve a child’s quality of life and sometimes slow down the disease. She added that denial and lack of knowledge can harm not only the child’s health but also their emotional well-being, especially when they feel pressured to perform like others in school.

Dr. Devi discussed how a lack of understanding in schools can lead to isolation, bullying, and low self-confidence among children with rare diseases. She said that schools often focus too much on marks and standard performance, ignoring the individual strengths of students. She encouraged education systems to adopt a more flexible, understanding, and compassionate approach.

She also cleared a common misconception that physical limitations do not mean lower intelligence. Many children with rare diseases are talented in creative, artistic, and analytical fields. Schools should recognize and support these talents instead of judging students only by traditional standards.

For improvement, Dr. Devi suggested policy changes, better school infrastructure, trained counsellors, pilot projects in selected schools, and proper monitoring systems. She also recommended including rare disease awareness in school textbooks to promote empathy and understanding from an early age.

The session ended with examples of individuals with rare diseases who achieved success when given the right support. The discussion highlighted that inclusion is necessary for equal education. The organizers thanked Dr. Ratna Devi and all participants and reaffirmed their commitment to building inclusive learning spaces for every child.