Did you know that there are over 7000 rare diseases? Eighty percent of these diseases are caused by faulty genes affecting 350 million people globally. It is estimated that 50% of people affected are children, making rare diseases one of the most deadly and debilitating for children worldwide.
If you’ve been to this blog before, you’ve noticed the logo on the right called The Global Genes Project. I became an advocate for rare disease awareness when my son was born with the rare syndrome called Prune Belly Syndrome also know as Eagle Barretts Syndrome. Before that, I had no idea the syndrome existed and nor was I aware of so many other rare diseases and syndromes.
Prune belly syndrome, is characterised by a triad of symptons; a congenital disorder of the urinary system with the absence of abdominal muscles. It is very rare, and affects about 1 in 40,000 births. About 97% of those affected are male. Not only were we not aware of such a syndrome, but at the time our son was born, there were no other children with the same syndrome in Malta, and we don’t know if any have been born since.
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™. The Global Genes project builds awareness educates the global community and provides critical connections and resourses that equip advcates to become activits for their disease.
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.
Support the Global Genes™ movement today!
You can show your support by donating to the Global Genes project here. And just as the pink ribbon symbolizes breast cancer awareness and the red dress symbolizes heart health, the Blue Denim Genes Ribbon™ is the universal sign for rare and genetic disease awareness and helps unify a fractured community of thousands of small diseases who have not had a collective voice. If you would like a Global Genes Ribbon to show your support, please send me an email (subject line Global Genes project) and one will be sent to you.
I’ll be wearing my ribbon, how about you?