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Life with a rare disease can have infinite milestones, setbacks, traumas and triumphs—all likely to be interlaced with a variety of factors that can influence mental health and quality of life.
In fact, psychological symptoms are estimated to affect 75% of rare disease patients. Whether the cause is from the physical disease or dynamics surrounding it, it is time to remove the stigma around talking about mental health, understand the unique challenges of this community, and drive support and solutions to address them.
This Rare Disease Day, Syneos Health partnered with the Rare Disease Innovations Institute (RDII) to produce a patient-powered program focused on the intersection of mental health and rare disease.
Through a series of presentations by experts and advocates in the field—and panel discussions with patients and caregivers—this event shared experiences, perspectives, guidance and resources around the key mental health considerations related to living with a rare disease, and what can be done to address them.
Key Takeaways
- Understand the impact of mental health in the rare disease community, from both a medical and psychological standpoint.
- Explore the mental health implications in rare disease based on stage of life at diagnosis, and on visibility of the disease – from the patient and caregiver perspective.
- Learn some of the mental health challenges that patients with rare disease face, direct from the patients themselves
- Identify helpful, appropriate resources that address mental health needs specifically in rare disease.
