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
Maximizing Consumer Engagement with People Living with Rare Disease
Understanding the difficulties people with rare conditions often face can help set the table for the engagement challenges pharma marketers typically face.
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.
Health Union Launches RareDisease.Net
The aim is for anybody living with one of thousands of rare conditions to connect with others in the shared experience of living with a rare condition.
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.
Survey Reveals Most People with SMA Using New Gene Therapies
Three-fourths of survey respondents said they currently use an “SMN-enhancing” treatment, while another 19% said they previously used one.
Podcast
Living With Crohn’s & Rare Disease: Aaron Blocker
The winner of the 2022 Social Health Award for Revolutionary Researcher is Aaron Blocker. Aaron lives with Crohn’s disease and an ultra-rare genetic metabolic bone disease called hypophosphatasia. He uses his background in scientific research to break down those hard-to-understand topics related to his conditions so that patients can understand the most recent research and breakthroughs.
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