Edimer To Develop Innovative Disease Awareness Campaign In Support Of EDI200 Clinical Trial Recruitment
Compass Healthcare Marketers to Create a Community Outreach Program to
Increase Awareness of XLHED, a Rare Genetic Disorder
Edimer Pharmaceuticals, a biotechnology company focused on developing an innovative therapy for the rare genetic disorder, Xlinked Hypohidrotic Ectodermal Dysplasia (XLHED), today announced it has selected patient marketing agency, Compass Healthcare Marketers as their partner to drive
patient identification for EDI200, the company’s novel, proprietary, recombinant protein being developed for the treatment of X-linked hypohidrotic ectodermal dysplasia (XLHED). XLHED is a rare orphan disease that causes a range of symptoms including lack of sweat glands, poor temperature control, respiratory problems, and hair and tooth malformations. EDI200 represents the first potential treatment for this rare genetic disorder and one that could give newly born children with XLHED a chance to live a more normal life.
“We need to increase the awareness of XLHED as a serious medical issue,” said Neil Kirby, PhD, President and CEO at Edimer. “Our goal is to be connected with as many families affected by XLHED as possible and increase awareness of the genetics of this disorder. We chose Compass to help us engage this community because of their unique experience reaching and uniting individuals impacted by rare and orphan diseases.”
Edimer has teamed up with Compass to assist and expand current patient community outreach efforts and to help with recruitment for their upcoming clinical trials. Initial projects undertaken by Compass will include the redesign and relaunch of XLHEDNetwork.com as well as the creation of the “Have the Conversation” website.
Both websites are aimed at patients and caregivers as well as women who may be carriers of, or affected by, the genetic mutation responsible for XLHED. “Identifying and engaging those mothers and potential mothers who may carry the XLHED gene is not a simple task,” said Peter H. Nalen, president and CEO of Compass Healthcare Marketers. “Yet given the intimate knowledge that Compass has of the rare disease space and our expertise in patient and community outreach, we are confident we can help Edimer succeed in connecting with this community and bringing this very
important drug to market.”
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