Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.
To Eliminate the Challenges of Rare Disease.
We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.
RARE is Everywhere
Rare diseases affect 1 in 10 Americans, 30 million people in the United States, and 350 million people globally. Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.
Unity Creates Hope™
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.
It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for the nearly 7000 rare diseases which have been identified. According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare diseases.
Support the Global Genes® movement today by getting involved.
Many of our leaders support children, family or friends with rare diseases. They understand the fight on a deep personal level and keep in mind the needs of our community at all times.
Global Genes® and our leaders are committed to ensuring that our programs support our worldwide mission of awareness and outreach, education, innovation and technology and research, and collaborative partnerships.
This site is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. Through this site and linkages to other sites, Global Genes provides general information for educational purposes only. The information provided in this site, or through linkages to other sites, is not a substitute for medical or professional care, and you should not use the information in place of a visit, call consultation or the advice of your physician or other healthcare provider. Global Genes is not liable or responsible for any advice, course of treatment, diagnosis or any other information, services or product you obtain through this site.
IF YOU BELIEVE YOU HAVE A MEDICAL EMERGENCY, YOU SHOULD IMMEDIATELY CALL 911 OR YOUR PHYSICIAN.
If you believe you have any other health problem, or if you have any questions regarding your health or a medical condition, you should promptly consult your physician or other healthcare provider. Never disregard medical or professional advice, or delay seeking it, because of something you read on this site or a linked website. Never rely on information on this website in place of seeking professional medical advice. You should also ask your physician or other healthcare provider to assist you in interpreting any information in this Site or in the linked websites, or in applying the information to your individual case.
Medical information changes constantly. Therefore the information on this Site or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this Site or any linked websites is solely at your own risk.
Global Genes does not recommend or endorse any specific tests, products, procedures, opinions or other information that may be provided on the linked websites. The linked websites may contain text, graphics, images or information that you find offensive (e.g., sexually explicit). Global Genes, its licensors and its suppliers have no control over and accept no responsibility for such materials.