Mental Health Resources for the Rare Disease Community
Studies show people with rare diseases are more likely to suffer from anxiety and depression than people with more common diseases. They may be more predisposed to misdiagnosis and lack of treatment and care options. Help break the stigma as we learn more about mental health through resources, stories, and raising awareness.
Soft Bones Mental Health Publications and Webinars
Tips For Managing Anxiety
Anxiety and Emotional Health Webinar: Dr. Jen – June 2021
Join the Emotional Health Forum on HPP AND ME
Track Your Day-to-Day Moods and Mental Health!
Tracking your moods and symptoms can be an important way to address your mental health. The myHPP app is one way to capture valuable information to help you better manage your care and have productive conversations with your healthcare team.
Patient participation is the single most critical component of the myHPP app. Help us identify the needs of patients and families to create evidence-based approaches and uncover new goals for therapies.
Organizations That Provide Mental Health Support
More Resources
Mental health doesn’t have just one solution. It takes a multidisciplinary approach to identify and then remedy mental health conditions to address the whole person. It is important to recognize the impact that a diagnosis and continued disease progression has on the emotional wellbeing of patients, families, and caregivers. Global Genes has created repository of mental health resources. Learn more here.
