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Feb 26, 2013 | 12972 views | 0 | 167 | |
Millions of Americans will join others around the world this month in observing Rare Disease Day (February 28). They hope to help draw attention to rare diseases and the unique challenges faced by the nearly 30 million Americans affected by them. Because of the rarity of their conditions, patients are often challenged to find information, knowledgeable doctors and support for their condition. One such disease is Cryopyrin-Associated Periodic Syndromes (CAPS) – a serious, lifelong autoinflammatory disease that affects about one in one million people in the United States. Because there are so few CAPS patients, online resources play an important role in uniting the community. CAPSConnectsUs.com, a new educational website from Novartis Pharmaceuticals Corporation, enables CAPS patients in the United States to connect online to share their stories, encouragement and advice about managing daily challenges.
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