2010 Topical Conference Call Line-up

All calls will take place on Tuesdays at 5 p.m. Pacific / 6 p.m. Mountain / 7 p.m. Central / 8.p.m.  Eastern

Recordings will be available for all calls.

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January 5 – EDI200 (X-Linked HED Treatment) and NFED Patient Registry
Presenters – Dr. Neil Kirby, CEO, Edimer Pharmaceuticals and Mary Fete, R.N., M.S.N., C.C.M., NFED Director of Research

Edimer Pharmaceutial’s vision is to improve the health and quality of life of future generations affected by X-linked Hypohidrotic Ectodermal Dysplasia (XLHED). Their goal is to make EDI200 (an XLHED treatment) available to all families affected by XLHED. Dr. Kirby will explain EDI200 and

As a part of the EDI200 project, the NFED is establishing a patient registry for all individuals affected by any kind of ectodermal dysplasia. The goal of the patient registry is to facilitate communication between affected individuals, clinicians involved in their treatment and scientists who strive to advance the research on ectodermal dysplasias.

To listen to this one-hour Topical Conference Call, click here.

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March 2 – Fundraising
Presenters – Carol Agne, NFED Director of Development, and NFED Families
Families share their experiences with fundraising. The NFED Director of Development will explain how the NFED provides support to the family hosting the event and answers questions. 

Click here to register

May 4 – ENT Concerns
Presenter – John Stith, M.D.
Many individuals affected by ectodermal dysplasia questions and concerns related to their ears, nose and throat. This call will address some of the issues including hearing loss, ear wax and nasal secretions. 

July 6 - School Accommodation Plans
Presenter – To be determined
You’ll have an opportunity to review the School Advocacy packet prior to the call. A short review of the materials with more time to have your questions answered. Also, learn what the administration wants to see.

September 7 – Skin Concerns The ED Big Three:  Skin, Hair and Nails (Too cheesy for a title?)
Presenters – Alanna Bree, MD
Changes in the skin, hair and nails are typical in people affected by ectodermal dysplasias.  These changes can have a significant impact on those affected by them, and they can also help clinicians diagnosis what type of ectodermal dysplasia a patient is affected by based on what changes they see.  We will discuss the changes in the skin, hair and nails that help define the ectodermal dysplasias and discuss tips for treatment of these changes.

November 2 – “Chat with Mary Kaye Richter”
Presenter – Mary Kaye Richter, Parent and NFED Founder and Executive Director

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Did you miss a conference call?
Contact Kelley at Kelley@nfed.org to request an audio file
of the call or to receive the handout.