Learn More on Live Chat – Thursday, May 29 on Our Facebook Page – 6:30 – 7:30 p.m. Central Time
Dear NFED Families,
Edimer Pharmaceuticals has teamed up with Informed DNA to provide free genetic counseling services to families who have or suspect to have hypohidrotic ectodermal dysplasia (HED) or x-linked hypohidrotic ectodermal dysplasia (XLHED).
Informed DNA is a phone-based, confidential, genetic counseling service. Experienced, board-certified genetic counselors are available to talk to you.
What is genetic counseling?
Genetic counseling is a discussion between you and the genetic counselor, a health care provider who is trained in genetics and communicating genetic and medical information to families. Families who talk to a genetic counselor gain a better understanding of:
- HED and XLHED
- Their family history and experience with HED or XLHED
- How HED or XLHED is passed through families
- Genetic information and test results
- Clinical trial opportunities and potential treatment options
Why should you have genetic counseling via Informed DNA:
- You can receive genetic counseling from the comfort of your home or office, for free. The counseling takes place on the telephone. You can make an appointment that works for your schedule.
- You can talk to a health care provider who is trained in HED and XLHED.
- You can learn about genetics for free. Your genetic counselor will review your family’s medical history, explain how HED/XLHED is passed through families, explain genetic testing, and discuss clinical trial opportunities and potential treatment options.
- Knowledge is power. Understanding your family’s experience with HED/XLHED can help identify other family members who may develop XLHED or have the chance to have a child affected by HED/XLHED. Research options are advancing everyday and this information may determine if you or your family member is eligible to participate in ongoing clinical trials.
Live Chat
Have questions about the service? We will be hosting a Q & A session on our Facebook page on Thursday, May 29, 2014 from 6:30 – 7:30 p.m. Central Time (4:30 – 5:30 p.m. Pacific/5:30-6:30 Mountain/7:30 – 8:30 p.m. Eastern). We hope you can join us!
Ready to use the service?
You can make an appointment by visiting xlhed.informeddna.com or by calling (888) 475-3128. If you make an appointment using the website, choose “Create an account,” and submit your appointment request. Online scheduling is an easy option, and will enable you to set up an account from which to access your records.
Informed DNA will review your registration and let you know if you qualify for the free genetic counseling program. For your convenience, appointments are available day, evening or weekends.
The service is funded by Edimer Pharmaceuticals and is free to families who have or suspect to have HED or XLHED in their family. It is being offered to provide additional information to you and your family.
The information you provide during the genetic counseling session, including your name and contact information, and any of your family members’ names and contact information, will be strictly confidential and will not be shared with Edimer Pharmaceuticals without your permission.
Informed DNA uses the highest standards to protect your health information and is compliant with Health Insurance Portability and Accountability Act (HIPAA), other relevant government regulations and best practices.
Using this service in no way obligates you to participate in genetic testing, any clinical trials or research associated with Edimer Pharmaceuticals.
Warm regards,
Mary Fete
Executive Director