Chronic granulomatous disease (CGD) is an inherited primary immunodeficiency disease associated with granulomas, which are clumps of immune cells that form at the site of infection or inflammation. As a result, the body becomes much more susceptible to infections caused by bacteria and fungi.
CGD patients are often not able to fight off otherwise harmless and common germs; as a result, these individuals get very sick from infections that would only mildly harm a normal person.
The science behind this is the inability for cells in a CGD patient to produce neutrophils. These neutrophils, in healthy bodies, produce hydrogen peroxide which the immune system requires to fight off specific infections.
If you think a common cold is bad, imagine how it would feel if you were a CGD patient. Luckily, there is a new amazing resource for CGD patients, providers, and the whole affected community.
Horizon Pharma, a biopharmaceutical company, recently announced the launch of CGD Connections. This is a combination of efforts from the biopharmaceutical company and the CGD community to enable patients and caregivers with a way to share their personal experiences and resources.
The website was first developed in 2016 with the ultimate end goal being to create a connecting strand within the CGD community.
Gail Moore works at Horizon Pharma as the director of patient advocacy. For her, this is a personal mission, as she has two kids who struggle with primary immunodeficiencies. She only has great things to say about this new resource, finding that CGD Connections is a great way to provide support and communicate with others about everything CGD-related (not just the disease, but awareness and patient organizations).
According to Horizon Pharma, the most valuable asset of this CGD resource isn’t the website itself. Actually, they believe that it is the Facebook page associated with it as well as the content contributed by the CGD community that visits it. This page can enhance what others are doing and by doing so, advance the entire community.
Senior director in Horizon’s orphan division, Mark Meier, is thinking big picture on how to get the CGD community thoroughly involved in this new site. He claims that yes, they have created the initial platform, but the real challenge is getting patients and caregivers to come back again and again.
With that being side, Horizon Pharma is really stressing the need for constantly new and relevant information for the CGD community. This resource has the ability to touch a lot of lives as well as provide greater support for many people out there, whether they are the ones struggling with CGD or not.
To learn more about this project, click here and visit this story in Rare Disease Report.
