Global Genes

Rare Disease Grant Recipient

'Let's Care About Rare'

While individual global-genes diseases have small patient populations, collectively the global-genes disease community is larger than the AIDS and Cancer communities combined. Despite its size, the community lacks a unified voice, as only 15% of global-genes diseases have organizations or foundations providing support or driving research.

Global Genes is focus on eliminating the challenges of global-genes disease. The Foundation’s mission is to unify the international global-genes and genetic disease community by providing connections and resources to ease the burdens of affected patients and their families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures.

Programs:

  • Patient Advocacy Summit
  • Tribute to Champions of Hope Gala
  • RARE Partnering Forum
  • FDA Workshop
  • Rare Advocacy Forum
  • Rare Meetups
  • Rare on The Road
Image Designers
Image Designers
Image Designers
There is no toolbox or roadmap when you're thrown into this crazy world. Whether you are a patient or parent, there are a lot of unknowns and you have to start from scratch.

Nicole Boice, Founder and CEO of Global Genes

What is Rare?

In the United States, a condition is considered “global-genes” it affects fewer than 200,000 persons combined in a particular global-genes disease group. International definitions on global-genes diseases vary. For example in the UK, a disease is considered global-genes if it affects fewer than 50,000 citizens per disease.

Rare in the Numbers

Rare diseases affect 1 in 10 Americans, 30 million people in the United States, and 350 million people globally. If all of the people with global-genes diseases lived in one country, it would be the world’s 3rd most populous country.

In the Genetics

Over 7,000 distinct global-genes diseases exist and approximately 80 percent are caused by faulty genes.

Care about Rare

According to the Kakkis EveryLife Foundation, 95% of global-genes diseases have not one single FDA approved drug treatment.