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2010 Topical Conference Call Schedule

Topical Conference Calls are 60-minute educational and interactive workshops on a single topic related to ectodermal dysplasias. They are free. To participate in a call and get the calling instructions, you must register.

School Accommodation Plans

Tuesday, July 6, 2010
5 p.m. Pacific / 6 p.m. Mountain / 7 p.m. Central / 8.p.m.  Eastern
Presenter – Malinda Heuring, NFED Director of Education

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.

To Register: Email Kelley@nfed.org.

Skin, Hair and Nails Concerns in the Ectodermal Dysplasias

Tuesday, September 7, 2010 5 p.m. Pacific / 6 p.m. Mountain / 7 p.m. Central / 8.p.m.  Eastern
Presenter – Alanna Bree, M.D.

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.

 Chat with Mary Kaye Richter

Tuesday, November 2, 2010
5 p.m. Pacific / 6 p.m. Mountain / 7 p.m. Central / 8.p.m.  Eastern
Presenter – Mary Kaye Richter, Parent and NFED Founder and Executive Director

Want suggestions on how to get your toddler to wear dentures? Do you have ideas on future programs for the NFED?  Have you ever wondered why Mary Kaye started the NFED? Whether you have these questions or any of your own, this is your opportunity to talk to Mary Kaye about any topic related to the ectodermal dysplasias or the NFED.\

Recordings of Past Topical Conference Calls

To request a copy of any of the Topical Conference Calls below, email Kelley. Make the email Kelley a link to Kelley@nfed.org

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

Dr. Kirby presents Edimer Pharmaceutial’s vision 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 its development as a therapy to eliminate the symptoms of XLHED. Ms. Fete explains the Ectodermal Dysplasias International Registry which the NFED established as part of the EDI200 project. The goal of the Registry is to facilitate communication between affected individuals, clinicians involved in their treatment and scientists who strive to advance the research on ectodermal dysplasias.

Navigating the Medical Insurance Process for Dental Treatment Related to Ectodermal Dysplasia

Presenters:  Malinda Heuring, NFED Director of Education and Beth Pond, NFED Parent

This topical call will motivate you and get you on the right track for working with your medical insurance company to get benefits for dental work related to ectodermal dysplasia.  We will discuss:

  • Appeals process
  • Words NEVER to use when talking to the insurance company
  • and so much more.

School Accommodation Plans for Children Affected by Ectodermal Dysplasias 

Presenters: Malinda Heuring, NFED Director of Education and Beth Pond, NFED Parent

This topical call will teach you tips and tools and techniques on how to work with your child’s school to meet his or her needs. Issues addressed:

  • Educating school personnel on ectodermal dysplasias
  • School health care and emergency plans
  • Water and bathroom access
  • Field trips and extra curriculum activities

General Pediatric Concerns (Including Information on the H1N1 Virus)

Presenter: Timothy J. Fete, M.D., M.P.H., Children’s Miracle Network Distinguished Professor,

Chairman in the Department of Child Health, University of Missouri Health Care and Member of the NFED Scientific Advisory Council

General pediatric concerns including H1N1 and how it relates to ectodermal dysplasia, allergies and asthma are addressed. Oral health care issues are NOT discussed on this call. We will discuss allergies and asthma.


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.