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 & Learning:
- The ﬁnancial implications of rare disease that go beyond aﬀording 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 eﬀects 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
To learn more about MaxifyLife, visit their website.