The Health Union to present research on the impact on quality of life at three conferences throughout fall 2021


The results focus on the impact reported by patients of cystic fibrosis, hidradenitis suppurativa, spondyloarthritis on various quality of life factors.

Posted: October 25, 2021 at 2:00 p.m. EDT|Update: 1 hour ago

PHILADELPHIA CREAM, 25 October 2021 / PRNewswire / – Health Union has been accepted to present research at three prestigious conferences throughout fall 2021, focusing on the experiences and perspectives of people living with cystic fibrosis, hidradenitis suppurativa and spondyloarthritis. Research, leveraging data from syndicated and condition-specific data In America surveys, highlights Health Union’s in-depth understanding of the entire patient journey, including the significant impact of health status on quality of life.

2021 Health Union logo (PRNewsfoto / Health Union)

Cystic Fibrosis Research – North American Cystic Fibrosis Conference
Health Union will present quantitative research on how patients perceive the impact of the drug Trikafta, a cystic fibrosis transmembrane conductance regulator (CFTR), on their future and different aspects of quality of life. Research to be presented in poster form at the North American Cystic Fibrosis Conference, which will be held virtually 2-5 November.

The conclusions, based on the responses of the Health Union Cystic Fibrosis in America The 2020 survey of 384 people living with the disease found that those surveyed who currently used Trikafta were less likely to feel concerned about their future and more likely to be optimistic about the long-term success of their treatment plans. processing.

The authors of the research, titled “Hope for the Future: Optimism among Patients Using Trikafta for the Treatment of Cystic Fibrosis,” are representatives of Health Union Dana ingemann, Sidney Saleh-Kurtz and Kaitlyn McNamara.

Ankylosing spondylitis and axial spondylitis – International Society for Quality of Life Research

Health Union presents research at the 28th Annual Conference of the International Society for Quality of Life Research. The research, which is presented in poster form, aims to determine how the conditions of people with spondyloarthritis – radiographic and non-radiographic axial spondyloarthritis, as well as general spondyloarthritis – impact their quality of life and employment.

The research, based on the findings of the Health Union’s Ankylosing spondylitis / axial spondylitis in America The 2020 survey found that nearly seven in ten respondents considered their work or career to be negatively affected by their conditions, 30% received social security or disability benefits and almost a quarter had voluntarily stopped working . Meanwhile, only 6% considered their conditions to be under control with their current treatment plans.

The poster presentation, titled “Impact on Quality of Life and Perceived Treatment Effectiveness in Spondyloarthritis Patients”, will be available throughout the conference, which takes place virtually. October 12-28, and will remain accessible until November 30. Health Union Matt Ferry and Evan krieg is the author of this research.

Hidradenitis Suppurativa – Symposium on the Advances in Hidradenitis Suppurativa
Benefit Hidradenitis suppurativa in America 2020 survey results, Health Union has developed research to measure the impact of hidradenitis suppurativa (HS) on sex and intimacy, as well as the impact of sex and intimacy issues on management treatment and perspectives on quality of life.

Research found that 53% of survey respondents – all living with HS – said they had a strong fear of sex or intimacy. And these respondents were more likely than other respondents to say that it is difficult to find treatment options that work for their HS. They were also more likely to have low self-esteem due to their HS, to feel like a burden when talking about their HS with family and friends, and to say that people confuse their symptoms of HS. with poor hygiene.

A poster presentation of this research, titled “Fear of Sex / Intimacy, Poor Quality of Life and Treatment Challenges in Patients with HS,” was presented at the 6th Annual Symposium on Advances in HIV. ‘suppurative hidradenitis, which occurred online 24-26 Sep. The research was written by Health Union’s Rachel DiStefano, Amylyne Verrone, Cady Vishniac and Evan krieg.

About the Health Union
Health Union, with the recent acquisition of WEGO Health, maintains the largest team of experts, patient advocates and health leaders dedicated to social health. The company fosters social interactions that turn into valuable online health conversations, helping people with chronic illnesses find the information, connection, and validation they seek. Health Union does this by creating condition-specific online communities – posting original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with chronic and challenging health issues. The Health Union’s growing portfolio of condition-specific communities includes 36 online health communities, including,,, and

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