DOJOLVI™ The first and only medicine to treat long-chain fatty acid oxidation disorders(LC-FAOD).

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February 18,2021

We are pleased to share the news that Health Canada has approved DOJOLVI™ is (triheptanoin).

INFORM Network

The International Network for Fatty Acid Oxidation Research and Management (INFORM) was formed by Jerry Vockley in order to promote research and discussion into the cause, diagnosis, and management of fatty acid oxidation disorders (FAODs). We offer several learning opportunities throughout the year for patients, families, and researchers. Our network will provide ​a collaborative framework for ongoing communication and research regarding these disorders, as well as work with our partners to sponsor a meeting each year. Please plan to join us in the future to hear from the experts on a wide range of topics from molecular pathophysiology to treatment strategies.

Dr. Jerry Vockley, UPMC Children’s Hospital of Pittsburgh on the COVID19 vaccination and FAOD patients

Given the risk for significant metabolic decompensation due to an infection, the real protective properties of any vaccine far outweigh ant theoretical risks in my opinion. As for any vaccine, pretreating with anti-inflammatory agents (acetaminophen, ibuprofen, naproxen, but NOT aspirin) will decrease severe symptoms and stress related to the vaccine. Due to the presence of a chronic disease, patients with FAODs should be eligible for vaccine sooner than the general population.

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Virtual Tissue Bank

The Virtual Tissue Bank (VTB) grew out of the desire to share research sample information and testing results to help advance the diagnosis and treatment of fatty oxidation disorders and the carnitine cycle in order to increase knowledge and help patients worldwide.

INFORM Families

At INFORM Network, we offer a comprehensive resource for families and friends impacted by fatty acid oxidation disorders. Here you can learn the latest developments in genetic research and access important information on screening, diagnosis, and treatment.

Do you reside in Canada and are living with or caring for someone living with a LC-FAOD ?

Ultragenyx Pharmaceutical Inc. is planning a virtual Patient and Caregiver Advisory Board, click below for more information.

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The 2021 INFORM Lecture Series will be held on the 3rd Monday of each month starting in February and running through June.

Please save the dates below to your calendar today!
All presentations will begin at 10:00AM EST / USA – check the time in your region or country

February 15, March 15, April 19, May 17, June 21

Upcoming INFORM Lecture Series

June 21, 2021 / 10:00AM EST USA

Sandra Emily Belcher and Sylvie Stacy, MD, CE Outcomes, LLC, Birmingham, AL USA


Presentation: Determining the continuing educational needs and learning preferences of dietitians related to managing patients with LC-FAOD

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Prof. Ida Vanessa D. Schwartz, MD. and Bibiana Mello de Oliveira, MD, MSc. / Porto Alegre, BrazilUSA


Presentation: Fatty Acid Oxidation Disorders: A Multicentric Case Series Study from Southern Brazil

September 2021 Lecture Series

Watch Previous 2021 Lecture Series Below

(To view presentations, click image below)

05/17/2012

“VCLAD Nutrition Management Guideline”

Presenter: Sandy van Calcar PhD, RD

Oregon Health & Science University Chair, VCLAD Guideline Workgroup

04/19/2012

“MCADD in silico human liver mitochondria are vulnerable to CoA depletion”

Presenter: Christoff Odendaal, MSc in Biochemistry at Stellenbosch University in South Africa

Studying for his PhD at the University Medical Centre Groningen in the Netherlands

3/15/2021

The emerging role of the mitochondrial fatty-acid synthase (mtFASII) in the regulation of energy metabolism.
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Defining the structural and functional role of VLCAD in the FAO/ETC-SC through recombination with VLCAD to VLCAD KO mice heart mitochondria

Presenters: Khaled Alatibi, Yudong Wang

2/15/2021

Cardiolipin-binding peptide improves cellular bioenergetics in mitochondrial trifunctional protein (TFP)-deficient mice and patient fibroblasts
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Long-term experience with triheptanoin in 12 Austrian patients with long-chain fatty acid oxidation disorders

Presenters: Meicheng Wang, PharmD & Daniela Karall, MD

Watch Previous Webinars Below

(To view presentations, click image below)

4/7/2020

Mito Matters Q&A with Dr. Jerry Vockley, MD, PhD

​Join us for a Q & A with Dr. Jerry Vockley (UPMC, INFORM) to discuss the impact of Covid-19 for Fatty Acid Oxidation Disorders.

12/16/2019

Emerging Therapies for Phenylketonuria

Join Jerry Vockley, MD, PhD, director of the Center for Rare Disease Therapy and chief, Medical Genetics, at UPMC Children’s Hospital of Pittsburgh for a free webinar. Dr. Vockley will discuss emerging therapies for PKU or phenylketonuria, an inborn error of protein metabolism. The presentation is designed for patients, parents, guardians, and caregivers and will be followed by a live question and answer session.

Vockely Webinar- Novel Therapies for Fatty Acid Oxidation Disorders

2/5/2019

Novel Therapies for Fatty Acid Oxidation Disorders
by Jerry Vockley, MD, PhD

5/21/2018

Enhancing Expression and Chaperoning Unstable Proteins:
Getting closer to effective therapy for fatty acid b-oxidation disorders

​Al-Walid Mohsen, PhD Research Associate Professor of Pediatrics Medical Genetics,
Children’s Hospital of Pittsburgh / University of Pittsburgh.

4/23/2018

Loss of Retinal Pigment Epithelium: The Initial Event in LCHAD Retinopathy Progression?

Melanie Gillingham, PhD, RD / Associate Professor /Department of Molecular and Medical Genetics
Graduate Programs in Human Nutrition / Oregon Health & Science University

Modeling LCHAD Retinopathy in a Patient Derived Retinal Pigment Epithelium


Tiffany DeVine, PhD / Postdoctoral researcher /Department of
Molecular and Medical Genetics
Oregon Health & Science University

Approximately

0
Infants are Identified yearly with FAOD’s in the United States through Newborn Screening
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People Identified in the United States with FAOD’s
0
People Living in the World with FAOD’s

“I appreciate that INFORM always provides us the most advanced, the most professional, and the most comprehensive information about defects of beta-oxidation.”

TOSHIYUKI FUKAO, PROFESSOR, GIFU UNIVERSITY, JAPAN

“Together we can generate the energy to beat these diseases”

JERRY VOCKLEY, MD, PhD , INFORM, SCIENTIFIC ORGANIZER

“INFORM brings together the best and brightest researchers and physicians from around the world to discuss cutting edge research and best and new practices in fatty acid oxidation disorders.”

KEITH W. MCINTIRE, DEPARTMENT OF GENETICS COORDINATOR

“The challenge with being on the cutting edge is that you are always dealing with things that didn’t happen yesterday”.

JERRY VOCKLEY, MD, PhD , INFORM, SCIENTIFIC ORGANIZER

2021 Partners

With significant new research and best practices on the horizon,
INFORM 2021 promises to be our most informative meeting ever!

Unlocking the Future

We are committed to discovering new FAOD treatments and cures to improve the lives of our patients and their families.

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