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.
What Healthcare Marketers Should Know About Connecting With Women
It’s vital that healthcare marketers connect with women. Women make up 50.8% of the US population and make 80% of the healthcare decisions.
Quality of Life Impact Research Presented at Three Fall Conferences
The findings focus on the patient-reported impact of cystic fibrosis, hidradenitis suppurativa and spondyloarthritis on various quality of life factors.
The Positive Impact of CFTR Modulators: a Year-Over-Year Comparison
Current CFTR modulator usage increased from nearly half of respondents in 2019, when three modulators were approved, to 68% in 2020.
Cystic Fibrosis Patient-Reported Survey Data
Cystic fibrosis survey data reveals that many people living with CF are hopeful and optimistic, yet the future is unknown.
CFTR Modulator Use Among Cystic Fibrosis Patients
A Cystic Fibrosis survey finds patients who have never used a CFTR modulator are more likely to say CF negatively impacts their overall quality of life.
Podcast
Living With Cystic Fibrosis: Ella Balasa
Ella Balasa is the 2022 winner of the Social Health Award of Healthcare Collaborator, recognizing her work of bridging the gap between industry stakeholders and healthcare consumers. Ella shares how living with CF inspired her to advocate for herself and others and why she empowers others living with chronic conditions to be their own advocate.
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