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Show 405 Resources Having a rare disease is always a challenge. Diagnosis is difficult. Treatment is often experimental. Doctors and other health care personnel do not always understand rare disorders. There are no fundraising marathons or nationally known support groups for most unusual diseases. There are, nevertheless, several generic resources that might offer some help to those with rare disease and disability in general. The National Organization for Rare Disorders (<http://www.rarediseases.org/>), in addition to providing news concerning rare illness, also offers connections for those dealing with the same rare disorders. Connecting with others is strictly voluntary, of course, and doing so is only recommended with the caveat that individual expressions ofthe same disorder can vary tremendously. Every state has some form of two important organizations. The first, the federally mandated Protection and Advocacy system, investigates allegations of abuse and neglect of persons with disabilities in public and private institutional settings, such as in hospitals and privately owned nursing homes. Each state organization then prioritizes its remaining funding in the individual's legal defense of existing laws protecting people with disabilities, such as the Americans with Disabili- |