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HNF & Athena Diagnostics Form Strategic Alliance

by | Dec 17, 2018 | 0 comments

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HNF and Athena Diagnostics Form Strategic Alliance

They will Collaborate on Research and Provide Access to Genetic Testing for CMT

We understand that genetic testing can be a daunting journey, especially for patients concerned over high costs, access to testing and the worry that results may have an impact for future insurance. This exciting new partnership aims to relieve the stigma around genetic testing, provide the patient with empowering information regarding a CMT diagnosis, and outline next steps, including information on how a patient may be eligible to participate in research and clinical trials.

The strategic alliance will focus on five key areas:  

  • Providing diagnostic insights via quality genetic testing for participants in HNF’s patient registry, GRIN  
  • Facilitating research discoveries
  • Developing educational material to assist healthcare providers in identifying patients with CMT
  • Generating publications that provide insights into the diagnosis, management, and treatment of CMT, and
  • Encouraging patient enrollment in GRIN to facilitate participation in research and clinical trials

“With a significant pipeline of CMT research initiatives, current clinical trials and the near future of potential treatments, it’s critical that patients know their genotype in order to participate in research and clinical trials. By collaborating with Athena Diagnostics, we will ensure patients have access to affordable testing along with continued education on the importance of genomic testing.” – Allison Moore, Founder and CEO of the Hereditary Neuropathy Foundation

“Our strategic alliance with the Hereditary Neuropathy Foundation marks a milestone for Athena Diagnostics as we continue to provide diagnostic insights for patients living with Charcot-Marie-Tooth disease (CMT). Providing high quality genetic test information is crucial to improving outcomes by identifying appropriate clinical trials and emerging therapies for patients with CMT.” – Shalabh Chandra, Vice President and General Manager, Neurology, Athena

The Hereditary Neuropathy Foundation and Athena Diagnostics are available to help you navigate the complexities of determining what genetic tests to order, decide on the right time for genetic testing, and minimize out-of-pocket costs. Questions? [email protected]

Learn more on this topic

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Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.

New Study on CMT Type 2B

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

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