Parents and Patients at the center of research and discovery
Since 2015, GPER has operated in four strategic areas: influencing research, developing research, engaging in public policy, and sharing research. New to our work this year is an initiative to support eczema caregivers – a program that grew out of our own research on caregiver burden.
Our work in the realm of public policy focuses on identifying highest priority needs among parents and young patients with AD, and communicating those needs to support research funding, patient-responsive studies, and drug development. Last year, we hosted a patient focused drug development meeting in collaboration with four other US-based patient organizations and the FDA.
In 2019, we also developed, executed, and published a study on caregiver and family burden in partnership with a team of seven GPER parents and researchers (Capozza et al., Insights From Caregivers on the Impact of Pediatric Atopic Dermatitis on Families. Dermatitis, February 21, 2020). This study revealed very high levels of stress, worry, and depression among caregivers of children with moderate to severe AD. As a parent-led and parent-comprised organization, we are committed to responding to the needs of our membership, and, as noted above, this year we launched a new initiative to address this crisis in caregiver stress.
Building on the considerable momentum generated by the landmark More Than Skin Deep event, we will be leading several efforts in 2020 to align federal research funding with patient priorities and to sync clinical trial outcomes to those that matter most to patients and families. We continue to advocate for better, safer treatments for children with AD, and to speed the approval of those treatments that fulfill that promise.
GPER pioneers new ways to rapidly spread high-impact, practical, and high-quality research findings to families. In 2020, we launched a podcast, called Eczema Breakthroughs, which is a professionally-produced audio series featuring conversations between GPER parents and the world’s leading eczema researchers.
GPER is the proud winner of the IDEO Challenge related to tackling eczema-related bullying. Our teen-led effort was developed by parents and teens impacted by eczema. This innovative work will be spearheaded by a global Steering Committee of teens this year.
In addition to the snapshot above, we are leading many other exciting programs this year. Please get in touch if you’d like to join our movement!
Since 2015, GPER has operated in four strategic areas: influencing research, developing research, engaging in public policy, and sharing research. New to our work this year is an initiative to support eczema caregivers – a program that grew out of our own research on caregiver burden.
Our work in the realm of public policy focuses on identifying highest priority needs among parents and young patients with AD, and communicating those needs to support research funding, patient-responsive studies, and drug development. Last year, we hosted a patient focused drug development meeting in collaboration with four other US-based patient organizations and the FDA.
In 2019, we also developed, executed, and published a study on caregiver and family burden in partnership with a team of seven GPER parents and researchers (Capozza et al., Insights From Caregivers on the Impact of Pediatric Atopic Dermatitis on Families. Dermatitis, February 21, 2020). This study revealed very high levels of stress, worry, and depression among caregivers of children with moderate to severe AD. As a parent-led and parent-comprised organization, we are committed to responding to the needs of our membership, and, as noted above, this year we launched a new initiative to address this crisis in caregiver stress.
Building on the considerable momentum generated by the landmark More Than Skin Deep event, we will be leading several efforts in 2020 to align federal research funding with patient priorities and to sync clinical trial outcomes to those that matter most to patients and families. We continue to advocate for better, safer treatments for children with AD, and to speed the approval of those treatments that fulfill that promise.
GPER pioneers new ways to rapidly spread high-impact, practical, and high-quality research findings to families. In 2020, we launched a podcast, called Eczema Breakthroughs, which is a professionally-produced audio series featuring conversations between GPER parents and the world’s leading eczema researchers.
GPER is the proud winner of the IDEO Challenge related to tackling eczema-related bullying. Our teen-led effort was developed by parents and teens impacted by eczema. This innovative work will be spearheaded by a global Steering Committee of teens this year.
In addition to the snapshot above, we are leading many other exciting programs this year. Please get in touch if you’d like to join our movement!
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On September 23, 2019, hundreds of members of the eczema community gathered in person and by live webcast to share
their experiences at the More Than Skin Deep patient-focused drug development (PFDD) meeting held in Silver Spring, MD.
This meeting and a contemporaneous web-based survey was the first initiative of its kind for eczema. It was hosted by Global Parents for Eczema Research and four other organizations serving the eczema community in collaboration with the U.S. Food and Drug Administration (FDA).
The meeting and survey addressed the burdens of symptoms and impacts of eczema, as well as ways in which individuals
were treating and managing eczema. The 100-page report – available as a free download – compiles the important learnings
from both sources. It features survey and live polling data and direct quotations from adults and teens with eczema, parents of
children with eczema, and spouses and other family caregivers.
The report reflects a broad range of experiences offered by 160 participants who attended in person, hundreds more who
contributed via the live webcast, and 1,508 individuals from the U.S. and 57 other countries who completed the 32-item survey.
Download the report!
their experiences at the More Than Skin Deep patient-focused drug development (PFDD) meeting held in Silver Spring, MD.
This meeting and a contemporaneous web-based survey was the first initiative of its kind for eczema. It was hosted by Global Parents for Eczema Research and four other organizations serving the eczema community in collaboration with the U.S. Food and Drug Administration (FDA).
The meeting and survey addressed the burdens of symptoms and impacts of eczema, as well as ways in which individuals
were treating and managing eczema. The 100-page report – available as a free download – compiles the important learnings
from both sources. It features survey and live polling data and direct quotations from adults and teens with eczema, parents of
children with eczema, and spouses and other family caregivers.
The report reflects a broad range of experiences offered by 160 participants who attended in person, hundreds more who
contributed via the live webcast, and 1,508 individuals from the U.S. and 57 other countries who completed the 32-item survey.
Download the report!
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