Global Genes Interview
One in ten people in the US is diagnosed with a rare disease. In 2022, 30 million people in the US were born with a rare and genetic disease. While each of these diseases affects a small number of people, put them all together and there is quite a large group of affected individuals. These diseases come with unique symptoms and treatments. But they put a huge burden on the affected individual and their families.
Global Genes wants to eliminate the challenges of rare and genetic diseases by providing public educational materials.
Find out how Global Genes connects, empowers, and inspires individuals suffering from rare and genetic diseases.
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April 24, 2022
Global Genes Supports Rare Disease Patients And the Wider Communities
#346 Great.com Talks With... Global Genes
There are more than 7,000 distinct types of rare and genetic diseases. Each disease affects very small patient communities. But the global number of people affected by rare diseases is 400 million. In today's episode, we talked with Daniel DeFabio from Global Genes.
Global Genes is a nonprofit organization that empowers patients, offers rare disease care, and cares for the rare disease communities. They act as a resource hub for these diseases, with the goal of eliminating the challenges rare disease patients go through.
A Passion For Support
Daniel says that the organization operates in more than 100 countries in providing educational materials on how to overcome the challenges of rare diseases. So far, they've equipped and empowered 30,000 patients and advocated with tools and resources to battle rare diseases. Every person that connects with Global Genes is part of the rare disease community.
They call it, the rare disease families, and what this means is they become part of a big community that looks after each other. Global Genes has a passion for support and rare disease care. Daniel says that Global Genes works with more than 500 nonprofit organizations in hopes to make a change.
Listen to the whole interview to find out how Global Genes acts as a guiding light in the rare disease patient journey. They want to make a change and encourage you to do also. If you want to help, they welcome donations.
Want to know more about Global Genes? Make sure to visit their resource hub, and follow them on Facebook, Twitter, and Instagram.
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