Wednesday, September 9, 2015


While the Network is narrowly focused on a single rare disease, other worthy organizations take a step back to focus on the broader picture. Two such groups are in the news this month for their efforts to raise public awareness.

First, Global Genes works "to raise awareness for the over 7,000 different identified rare diseases that affect roughly 30 million Americans and approximately 350 million people worldwide." As part of that mission, on September 24th and 25th, Global Genes will be holding its fourth annual RARE Patient Advocacy Summit in California. On behalf of the Network's members, our President, Becky Mock, will attend both the Summit and the Tribute to Champions of Hope Gala on the 26th. You can read more about the Summit and the Gala here:

The second organization in the news this month is the American Chronic Pain Association, which works year-round to raise awareness of chronic pain, an issue of concern to many XLHers. The ACPA's work is particularly noteworthy in September, since it's been designated "Pain Awareness Month." You can read more about this designation and also find useful links to information about pain treatment options here:

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