Understanding Rare Conditions: The Impact on Relationships
Findings from Health Union’s surveys of its rare condition communities show one’s relationships and social life can take significant hits.
Posts
Rare Conditions: The Impact of Mental Health Concerns
More than half of NMOSD In America 2022 respondents said being diagnosed with NMOSD has negatively impacted their mental health.
Understanding Rare Conditions: The Multifaceted Financial Impact
More than a third of Health Union’s Myasthenia Gravis In America 2022 survey respondents said their condition has negatively impacted their finances.
Understanding Rare Conditions: Support & Connection
The internet has allowed people living with chronic conditions to find information, connection and support that might not have been readily available.
Sickle Cell Disease Survey: Different Experiences with HCPs, Emergency Departments
Unfortunately, 65% of Sickle Cell Disease In America respondents who have visited an emergency department said they feel judged or stigmatized by the staff.
Podcast
Living With & Caregiving – Elle Cole
Elle is a mom of twin daughters, one of whom is living with both sickle cell disease and type 1 diabetes, and is the 2022 Social Health Award winner for Caregiving Champion. Elle shares why her advocacy work is important to her and resources for caregivers.
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