Research and Drug Trials- How informed do you want to be?

Rare Disease patients, caretakers, and those treating these families may feel frustrated when they assume inadequate research is being done in this devastating group of disorders. In fact, several initiatives exist through government programs, drug trials, and patient advocacy organization efforts to find treatments and cures for rare disorders. There are working groups formed to discuss societal obstacles that prevent the rare patient from attaining better quality of lives.

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* 1. Are you aware of research being done for your rare disorder?

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* 2. Are you aware of pharmaceutical drug trials for your rare disease?

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* 3.      Are you aware of your disease-specific advocacy group efforts for your rare disease?

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* 4.     Do you feel it’s important for patients and families in the rare disease community to be made aware of research, drug trials, and working group, efforts in their disorders?

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* 5.      How often do you keep up with on-line resources that highlight research efforts?

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* 6. Do you think information about research efforts is easy to locate?

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* 7.      Do you think information about drug trials is easy to locate?

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* 8.     Do you think advocacy organizations do a good job of making you aware of efforts to benefit rare disorders?

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* 9.     Do your physicians share information about research or drug trials being conducted?

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* 10.      Would you like to hear more about research or drug trials?

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