For over 30 years Dr. Hayflick has been taking care of people with NBIA disorders. Dr. Hogarth joined her in 2000, and for the past 20+ years they have served the clinical needs of people with NBIA disorders worldwide. Did you know that the Hayflick team has seen NBIA children and adults from every continent, as well as from most states in the United States! While here, they are able to do extensive clinical evaluations with our team, have their questions answered by Dr. Hayflick and Dr. Hogarth and participate in research. Our expertise and the abundant resources at OHSU allow us to provide these types of consults and continue to provide long-distance support to NBIA families and their local physicians. Our team is more well known for its research work so we want to highlight this clinical care service which can be invaluable to families struggling with a new diagnosis or a change in their child’s health.

What can you expect from clinical care at the NBIA Center of Excellence at OHSU?

1.) A physician can refer a patient to our center or a parent/guardian can inquire about a clinical visit by emailing genetic counselor, Allison Gregory, at info@nbiacure.org

2.) Allison and our staff will work with the patient to schedule them on a date/time that works for everyone involved. Our clinic has 1-2 slots set aside each month to accommodate patient appointments.

3.) We will help the family navigate resources for travel, transportation, lodging, etc. to make their trip as smooth as possible.

4.) At the appointment, the family will meet with members of our core team, who are listed below.

Medical Geneticist
Susan Hayflick, MD

Movement Disorders Neurologist
Penelope Hogarth, MD

Certified Genetic Counselor
Allison Gregory, MS, CGC

Certified Genetic Counselor
Puneet Rai, MS, CGC

Research Coordinator
Alison Freed, BA

5.) In addition to this core team, there are a number of other specialists at OHSU who have seen patients with NBIA. These providers can be consulted if an evaluation is needed or a patient has questions in their area of expertise.

Neuropathologist
Randy Woltjer, MD, PhD

Medical Geneticist
Caleb Rogers, MD

Pediatric Neurologist
Jenny Wilson, MD

Neuro-Ophthalmologist
William Hills, MD, OD

Genetic Ophthalmologist
Mark Pennesi, MD, PhD

Metabolic/Nutrition Professor
Melanie Gillingham, PhD

Speech/Language Pathologist
Melanie Fried-Oken, PhD, CCC/Sp

Molecular Diagnostics Medical Director
Alaa Koleilat, PhD, FACMG