Celebrating Rare Disease Day
On February 28th, our lab lit up in green, blue, pink, and purple in solidarity and support for those affected by rare diseases. Rare Disease Day leads the efforts in raising awareness and generating change for the 300 million people living with a rare disease worldwide.
As a lab that studies pediatric nephrotic syndrome, a rare kidney disease, we believe in creating equitable access to healthcare. We hope our work inspires the next generation of researchers to study and make discoveries of the treatments and even cures of rare diseases.
Even after Rare Disease Day has passed, there are still ways we can drive change and awareness for rare diseases.
Participating in Research
Volunteering to participate in a research study like BIGKiDs can help scientists learn more about rare kidney diseases. This may eventually lead to improved understanding, treatments, and potentially cures.
Raising Awareness
You can also help by raising public and legislative awareness of nephrotic syndrome. The more people learn about these rare diseases, the greater the possibility that sufficient funds will be raised for research and for assistance to individuals with nephrotic syndrome. We know of many individuals and groups who have made a difference by building awareness of the condition in their family.
Here are some of the most successful approaches:
Join advocacy groups like NephCure Kidney International and the Nephrotic Syndrome Foundation
Write a letter to your community newspaper or blog
Reach out to your representatives in congress and ask your friends and family to do the same
Participate at conferences, seminars, and health fairs
Join a community on social media like NephCure and reshare educational posts
Think of ways you can help raise awareness!
