Your experience and insights are valuable and will help us to better understand the real-life challenges that rare disease families experience navigating the healthcare system.  Please answer the questions to the best of your ability and you can choose not to answer as well. All responses will be kept confidential. 

We understand that accusations of lying about, or falsifying a medical condition, are extremely upsetting. Accusations may invoke feelings of anger, frustration, shame, and fear. Some patients and caregivers feel traumatized by their experiences and may need professional help to heal and feel safe to re-engage with medical and other providers. Some patients and caregivers may even have feelings of hopelessness and self-harm. At the end of this survey, we will list numbers where safe, anonymous mental health providers can be reached by anyone contemplating suicide or self harm. We will also list email and phone numbers where patient advocates can be contacted who are familiar with helping patients and caregivers navigate through, and recover from, such accusations. 

As a reminder, the results of this survey are completely confidential. We appreciate your honest answers, and No attempt will be made to personally identify respondents who wish to remain anonymous.