Support is important for patients and families affected by rare and complex disorders. It is often a part of successful care plans. Support can come in many ways, like being a listening ear, taking responsibility for care decisions, or being physically available to do chores and errands. How important is support on your end? Take this survey to help us find out!

Over the past decade, increasing chatter in the rare disease community suggests that patients with rare diseases more often misdiagnosed than other patients, such as with Munchausen’s Syndrome By Proxy, Conversion Disorder, and Somatoform Disorder. These misdiagnoses create problems when rare disease patients need access to the right medical care. 

Right now, we need more solid evidence than stories in the community that this is happening, and we need your help for this. Please complete this survey to share your experience!

Many rare disease patients and families face obstacles to getting proper medical care. They must deal with a complex medical system that is poorly designed to meet the needs of the patient.

More clinicis must be built around those needs the patients express as important. Take this survey to share your thoughts on what these types of clinics need.

Rare Disease patients, caretakers, and those treating these families may feel that not enough research is being done on rare disorders. In fact, several initiatives exist through government programs, drug trials, and patient advocacy organizations' efforts to find treatments and cures for rare disease. There are working groups formed to discuss roadblocks in society that prevent rare patients from having better quality of life. This survey will help us find out how much information is reaching you about research and drug trials. Thank you!