SUPPORT BEYOND THERAPEUTIC PRODUCTS 

THE HOLISTIC TOLL LEVIED UPON RARE DISEASE PATIENTS, CAREGIVERS, AND FAMILIES

To provide insight on the many burdens patients, caregivers, and families must manage when living with a rare diagnosis; while educating the broader rare disease ecosystem regarding the needs necessary to maintain and/or improve quality of life.

Paper Insights & Learnings - The ?nancial implications of rare disease that go beyond a?ording treatment
- Addressing lifelong habits and the changes necessary to managing a rare condition
- The family dynamic and living with rare challenges from childhood to adulthood
• The implications of living with a rare condition has on quality of life
• How rare disease knows no limits and e?ects each member of the family
- Social and Psychological Implications of rare disease
• How patients manage the holistic toll of living with a rare condition
- The role stakeholders play in assisting patients overcome routine challenges born by a rare disease

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