Global Genes

Rare Disease Grant Recipient

'Let's Care About Rare'

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

Global Genes is focus on eliminating the challenges of rare disease. The Foundation’s mission is to unify the international rare 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 “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare 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 rare diseases lived in one country, it would be the world’s 3rd most populous country.

In the Genetics

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

Care about Rare

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