MENTAL HEALTH FOR RARE
A Collaborative Program for the Rare Disease Community
Mental health is a critical yet often overlooked aspect of care within the rare disease community. Individuals with rare diseases frequently face unique emotional and psychological challenges, including feelings of isolation, frustration with delayed diagnoses, and the burden of managing complex medical care. These experiences can lead to anxiety, depression, and emotional distress, which, if left untreated, can further diminish quality of life. Additionally, caregivers of individuals with rare diseases often experience high levels of stress, which can impact their mental health and caregiving capacity.
Addressing mental health within this community is essential for fostering resilience, improving overall well-being, and ensuring that both patients and their families receive holistic care. Prioritizing mental health not only helps individuals cope with the daily challenges of their condition but also enhances their ability to navigate the healthcare system, advocate for their needs, and maintain supportive relationships. By integrating mental health support into rare disease care, we can empower patients and caregivers to live fuller, more balanced lives.
Our Vision
Mental Health for Rare envisions a world where rare disease patients, caregivers, care partners and siblings have access to quality mental health resources and services that are adapted to their unique needs.​ Mental Health for Rare programs are dedicated to:
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Launching mutually beneficial collaborations that improve access to Mental Health services for rare disease patients, caregivers, care partners and siblings.
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Promoting the use of Mental Health Therapy across the rare disease ecosystem.
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Supporting and executing research & publications that analyze the impact of rare diseases on the mental health of patients, caregivers, care partners and their families.
Live Programs
Developing Rare Disease Mental Health Specialists -​ Rare Therapist Program​​​
Special thanks to the following sponsors
