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InformedDNA Partners With Edimer Pharmaceuticals To Support XLHED Research

6/24/2014 8:13:28 AM

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ST. PETERSBURG, Fla., June 24, 2014 /PRNewswire-USNewswire/ -- InformedDNA announced today a strategic new collaboration with Edimer Pharmaceuticals to address a critical research need for patients with X-linked Hypohidrotic Ectodermal Dysplasia (XLHED), a rare genetic disorder. The partnership will allow InformedDNA to identify patients with XLHED and support Edimer's clinical programs.

Under the agreement, InformedDNA has developed a genetic counseling program for patients and families affected by XLHED. This program will provide genetic counseling services to individuals and families as well as assist in identification of individuals with XLHED and support Edimer's clinical program.

"Identifying and serving patients with rare diseases is universally a challenge for orphan drug companies during the development phases as well as once the drugs are commercialized," stated Kelle Steenblock, MS, CGC, senior vice president for clinical services at InformedDNA. "Board-certified genetic counselors are uniquely qualified to address the complex scientific and clinical needs of patients with rare diseases, along with the psychological and social implications of conditions that may also affect family members across multiple generations. In many cases, finding people that will benefit from these novel therapies can be difficult, so working with InformedDNA's genetic specialists will allow Edimer to find and share important information with patients that will benefit most."

As part of the newly developed genetic counseling program, InformedDNA will also educate the community on XLHED, provide patients with family history-based risk assessments, discuss the mode of inheritance and implications for family members, share options for genetic testing, highlight the importance of early diagnosis and potential treatment options, and discuss current clinical trials.

"This collaboration with InformedDNA is uniquely supporting Edimer's research goals for EDI200," said Neil Kirby, PhD, President and CEO at Edimer. "In growing the body of genetic data available on XLHED, we can better serve the population of patients and families impacted by this rare genetic disease."

XLHED is a rare orphan disease caused by a change in a gene called EDA. The disease is characterized by a range of symptoms including lack of sweat glands, poor temperature control, respiratory problems, and hair and tooth malformations. There are currently no treatments on the market for XLHED; Edimer Pharmaceuticals is solely dedicated to the development of EDI200, an ectodysplasin-A1 (EDA-A1) replacement protein currently in Phase 2 clinical trials.

About InformedDNA
InformedDNA brings the promise of personalized healthcare to life by helping individuals and healthcare providers better understand family health history and genetics. InformedDNA is the authority on the appropriate use of genetic testing leveraging the expertise from the largest network of independent genetic specialists to help ensure health plans, hospitals, employers, community clinicians and patients all have access to the highest quality genetic services. InformedDNA's key offerings include clinical genetic counseling, genetic testing utilization management, and personalized hereditary risk assessment and prevention solutions.

About Edimer Pharmaceuticals
Edimer is a privately held biotechnology company based in Cambridge, Massachusetts dedicated to delivering a significant and durable improvement in the health and quality of life for future generations affected by XLHED via development of EDI200.

Edimer was established in 2009 with investment from Third Rock Ventures and VI Partners. NEA and Sanofi-Genzyme BioVentures joined the initial investors in a Series B round of equity financing that closed in July of 2013.

For further information on Edimer Pharmaceuticals, please visit To receive regular updates about Edimer Pharmaceuticals' progress please join the XLHED network at

About EDI200
EDI200 is an ectodysplasin-A1 (EDA-A1) replacement protein, representing the first of a new class of molecules rationally designed to correct a specific developmental disorder. EDI200 has been shown to bind specifically to the EDA-A1 receptor (EDAR), activating the signaling pathways that lead to normal ectoderm development. EDI200 has demonstrated substantial and durable efficacy in animal models of XLHED with notable reduction in mortality and morbidity. The U.S. Food and Drug Administration (FDA) granted Orphan Drug designation and Fast Track status to EDI200. EDI200 also has Orphan Drug designation in Europe.

EDI200 is currently being tested in a phase 2 clinical trial designed to evaluate the safety, pharmacokinetics, pharmacodynamics and efficacy of EDI200 in XLHED-affected male newborns in the first two weeks of life. For additional information on this clinical trial, please visit, identifier NCT01775462.

SOURCE Informed Medical Decisions, Inc. (InformedDNA)

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