Global Genes Project Patient Advocacy Summit – September 12th & 13th

Global Genes Project Patient Advocacy Summit – September 12th & 13th


Bill Krenn, Cure AHC Vice President

This year I again had the opportunity to attend the Patient Advocacy Summit hosted by Global Genes. Cure AHC is part of the RARE Foundation Alliance, a group of rare disease foundations across the world, and our President Jeff Wuchich serves as a Patient Advocate Representative on their Corporate Alliance and Chair of the Patient Access Committee.

The Patient Advocacy Summit is an opportunity to have patients, parents, foundation leadership, doctors and industry leaders come together to hear about and discuss current issues in rare disease. Hopefully, all AHC parents out there have had the opportunity to meet or connect with the AHC community. These are people who understand you and what you are going through like no one else. Global Genes gives us this opportunity as well; although the specifics of the disease you are facing may be different many of the challenges, fears and hopes are the same. It also gives us the opportunity to learn from each other and provide opportunities for collaboration. There are approximately 7,000 rare diseases out there, that is more than the number of those facing AIDS and cancer combined. Out of those 7,000 diseases only 500 have an FDA approved therapy, pharmaceutical or otherwise. More specifically even for those that we know the genetic cause of disease only 5% have drug therapies. While each of our individual disease communities are small the potential for the rare disease population as a whole to make an impact is huge.

This is why we feel it is so important to get involved with events like these. When we work together towards a common goal we all benefit. We share in each others successes and learn from each others failures. That is why as we get closer and closer to a cure it is essential that we look past what divides us and look forward to a future without AHC.

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