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What you can do
- Familiarize yourself with the symptoms and current research.
- Register to receive information and updates, network with other sufferers, their families and health professionals, and help build our national database.
- Donate money, time and services to the effort to find a cause and a cure.
- Contact your state and local health services and ask if they have heard of the disease and/or the symptoms. Ask them what they are doing to spread awareness of the disease.
- Talk to your doctor about the disease and provide him or her with the means to find out more.
- Contact your elected officials and make them aware of the disease and the need for funding further research.
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