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Why You Should Register For This Event

  • Learn from world-renowned pheo para experts
  • Learn how to best advocate for yourself and loved ones
  • Connect and share with other patients and caregivers
  • Get your questions answered by experienced clinicians
  • Learn about experienced centers near you
  • Become a part of the pheo para community

Agenda

We can’t wait to have you tune in for this unique opportunity to learn from and share with world-renowned experts in pheochromocytoma and paraganglioma presenting on all topics related to the illness. The agenda and speakers are below, but subject to change.

Each session will be moderated and hosted by a patient or caregiver who will speak on how you can unleash your inner phearless superhero with a focus on mind/body wellness.


Sunday, August 21

  9am PT/noon ET
(60 minutes)

Inga Harbuz-Miller

MD, University of Rochester Medical Center

Inga Harbuz-Miller, MD is an Assistant Professor at the Division of Endocrinology, Diabetes and Metabolism, University of Rochester, School of Medicine and Dentistry in Rochester, NY. She received her medical degree from the University of Medicine and Pharmacy “Carol Davila” Bucharest, Romania. She completed the Internal Medicine Residency training at Morristown Medical Center in affiliation with Sidney Kimmel Medical College at Thomas Jefferson University and continued her education with a fellowship in Endocrinology, Diabetes and Metabolism at University of Missouri, Columbia Missouri.

Her interests are endocrine neoplasia, the genetic mechanisms of inherited endocrine disorders, pathophysiology and therapy of endocrine cancers and surveillance. She is a passionate advocate for her patients, promoting access to care and education. Her national and international collaborative efforts have brought newer treatment modalities closer to her patients, giving them access to research and allowing one step closer to cure for adrenal neoplasia.

Dr. Harbuz-Miller is a committed educator. She is an Endocrine Society 2017 FLARE alumna. She has served on the Annual Meeting Steering Committee for ENDO 2018, Trainee and Career Development Core Committee and has Chaired Early Career Forum 2019-2021. She is currently an active member of Adrenal Pituitary Special Interest Group through the Endocrine Society.

  10 PT/1 ET
(60 minutes)

Tobi Else

MD, University of Michigan Health

Dr. Else’s primary appointment is with the Division of Metabolism, Endocrinology and Diabetes. He received his MD degree from the University of Hamburg, Germany. He pursued his clinical training at the University of Hamburg (Residency: Internal Medicine) and the University of Michigan (Residency: Internal Medicine, Fellowship: Endocrinology). His main research interests are the genetics of endocrine tumors. Dr. Else’s clinical practice focuses on the care for patients with benign and malignant endocrine tumors, particularly pheochromocytoma, adrenocortical tumors and neuroendocrine tumors as well as accompanying hormone excess syndromes (e.g Cushing syndrome, primary aldosteronism). Dr. Else has a particular interest in taking care of patients with hereditary syndromes that predispose to the development of endocrine tumors (e.g. Multiple Endocrine Neoplasia (MEN) type 1, MEN2A & MEN2B, Hereditary Paraganglioma Syndrome). He attends the Multidisciplinary Endocrine Oncology Clinic, where patients with tumors receive diagnostic procedures and treatment. In addition, he is part of the Cancer Genetics Clinic, which evaluates patients for hereditary syndromes and also facilitates regular exams and surveillance for patients at risk for endocrine tumors.

Jenae Osborne

MS, CGC, University of Michigan Health

Jenae is a 2008 graduate of the Indiana University Genetic Counseling Program. Prior to joining the genetic counseling team at UM in 2013, Jenae was a cancer genetic counselor in Knoxville, TN for 5 years. Currently Jenae is a senior genetic counselor working in the Cancer Genetics Clinic. She also provides genetic counseling for the Endocrine Oncology clinic and serves as the point of contact for the UM VHL Comprehensive Clinical Care Center through the VHL Alliance. She also one of the co-directors of the Pheo Para Alliance Centers of Excellence at UM. Jenae is one of the primary supervisors for students rotating through the Cancer Genetics Clinic.

Monday, August 22

  9am PT/noon ET
(60 minutes)

David Taïeb, MD, PhD

Aix-Marseille University, France

David Taïeb (MD-PhD) is full professor of Nuclear Medicine at Aix Marseille university, France. He is member of the EANM Oncology & Theranostics Committee. He holds numerous research grants and is co-editor of 2 textbooks dedicated to Nuclear Endocrinology. He has over 240 peer-reviewed publications on PubMed. A major focus of his clinical research in collaboration with the NIH has been to improve disease characterization by molecular imaging of pheochromocytoma and paraganglioma (PPGL). In addition, he is actively involved in therapeutic nuclear medicine with a major focus on endocrine neoplasms. He is also affiliated to INSERM (French Institute of Health and Medical Research) with several on-going basic research projects on nanomedicine and nucleic acid therapeutics. More recently, he has coordinated the EANM Practice Guideline/SNMMI Procedure Standard 2019 for radionuclide imaging of PPGL. He is currently co-chair of the upcoming future clinical practice guidelines for patients harboring germline mutations in the SDHD and SDHB genes

https://publons.com/researcher/2071785/pr-david-taieb/

  10 PT/1 ET
(60 minutes)

Debbie Cohen

MD, FASN, Penn Medicine

Debbie L. Cohen, MD is a Professor of Medicine at The University of Pennsylvania. She graduated medical school at The University of The Witwatersrand in Johannesburg, South Africa. She completed her internal medicine residency at Einstein Medical Center in Philadelphia and her nephrology fellowship at The University of Pennsylvania. She is a nephrologist and is the director of the Hypertension Program at Penn. She has an interest in complex hypertension and adrenal hypertension and is the Director of the Pheochromocytoma/Paraganglioma Program at Penn with a focus on the treatment and management of pheochromocytomas. She also has a research interest in alternative methods of treating hypertension and completed a NIH grant studying the effects of yoga on hypertension. She was also an investigator in the NIH funded SPRINT study and is a principal investigator on the CRIC study and the ongoing renal denervation studies (Symplicity HTN-3 and SPYRAL ON MED/OFF MED). She is also the current associate editor of the Nephsap Hypertension section.

Matthew Nazari

MD, NIH

Dr. Matthew A. Nazari is a clinical research fellow working with Dr. Karel Pacak in the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIH, Bethesda, MD. He is an internal medicine and pediatric physician at Georgetown University Hospital. He graduated magna cum laude from Georgetown University where he received his bachelors in human science. He subsequently received his medical degree from Drexel University College of Medicine with full honors and finalized his medical training at Georgetown University Hospital. His research has focused on the cardiovascular implications of excess catecholamine states. He and his colleagues have further characterized catecholamine-induced tachyarrhythmias, hypertensive crises, coronary arterial involvement, and subsequent management. He and his colleagues are currently focused on investigating the influence of excess catecholamines on cardiac and vascular remodeling, fibrosis, and sudden cardiac death.

  11 PT/2 ET
(90 minutes)

Dhaval Patel

MD, NIH, – (adrenal)

Dhaval Patel, M.D.,is a board certified general surgeon who specializes in endocrine surgery and has an extensive experience in treating complex endocrine surgical patients using state-of-the-art equipment and medical management. Dr. Patel performs the gamut of endocrine surgery including partial and total thyroidectomy, partial and subtotal parathyroidectomy, minimally invasive adrenalectomy, and pancreatectomy. He has joined the practice of Harold Chung-Loy, M.D. and Vincent Moss, M.D. and is excited to be a part of the Hackensack Meridian Medical Group team.

Prior to joining HMH, Dr. Patel was an Assistant Professor of Surgery at the Medical College of Wisconsin and the National Institutes of Health. He has been published in leading journals such as New England Journal of Medicine and the Annals of Surgery. He has presented leading edge endocrine surgical research both nationally and internationally. He is a Fellow of the American College of Surgeons and an active committee member of the American Association for Endocrine Surgeons. He is also a member of the Association for Academic Surgery, the Society of Surgical Oncology, the Endocrine Society, and the American Association of Clinical Oncologists.

Dr. Nitin Pagedar

Otolaryngology, U. of Iowa (carotid body)

Nitin Pagedar, MD, MPH, is an Associate Professor of Otolaryngology – Head and Neck Surgery at University of Iowa, where he has worked since 2008. He grew up in Cleveland, Ohio, where he did his residency training before moving to Toronto for a fellowship in head and neck oncology. He is fortunate to work with a fantastic multidisciplinary team taking care of patients with head and neck cancer, paraganglioma, and thyroid and parathyroid disorders. Dr. Pagedar directs the annual Iowa Head and Neck Course and am also the editor-in-chief of Annals of Otology, Rhinology, and Laryngology. He is married with two children.

Natalie Lui, MD

MD, Stanford (chest)

Natalie Lui, MD, MAS is an Assistant Professor of Cardiothoracic Surgery in the Division of Thoracic Surgery at Stanford University. She completed general surgery residency at the University of California San Francisco, which included two years of research in the UCSF Thoracic Oncology Laboratory and a Master in Advanced Studies in clinical research. She then completed thoracic surgery fellowship at Massachusetts General Hospital, which included visiting rotations at Memorial Sloan Kettering and the Mayo Clinic. Dr. Lui’s surgical practice consists of general thoracic surgery with a focus on thoracic oncology and robotic thoracic surgery. Her research interests include intraoperative molecular imaging for lung cancer localization, increasing rates of lung cancer screening, and using artificial intelligence to predict lung cancer recurrence. She is the recipient of the Donald B. Doty Educational Award in 2019 from the Western Thoracic Surgical Association, the Dwight C. McGoon Award for teaching from the Thoracic Surgery Residents Association in 2020, and the Carolyn E. Reed Traveling Fellowship from the Thoracic Surgery Foundation and Women in Thoracic Surgery in 2022.

Michael Ahdoot

MD, Cedars-Sinai

  5PT/8ET

Tuesday, August 23

  9 PT/noon ET
(60 minutes)

Ruth Casey

MB BCH BAO PhD, Cambridge University Hospital, Addenbrookes, UK

Dr Ruth Casey is a Consultant Endocrinologist in Cambridge University Hospital NHS Foundation Trust and holds an academic position as a senior research associate in the Department of Medical Genetics, Cambridge University. Dr Casey leads neuroendocrine tumour (NET) and endocrine cancer services in Cambridge encompassing both clinical practice and independently funded research. She has a specialist research interest in NETs including SDH deficient tumours (phaeochromocytoma, paraganglioma and GIST) and the molecular mechanisms underpinning endocrine cancers. Dr Casey led the application for Centre of Excellence status for the management of phaeochromocytoma and paraganglioma on behalf of Cambridge University Hospital in 2021. Dr Casey acts as a medical advisor for AMEND and PAWS GIST.

Christina Pamporaki

MD, PhD, Technische Universität Dresden, Germany

  10 PT/1 ET
(60 minutes)

Daniel Pryma

MD, Penn Medicine

Daniel Pryma is the Gerd Muehllehner Professor of Radiology and Chief of the Division of Nuclear Medicine Imaging and Therapy at the Perelman School of Medicine at the University of Pennsylvania where he focuses on therapeutic radiopharmaceuticals and companion diagnostics. He is also co-Leader of the Radiobiology and Imaging Program of the Abramson Cancer Center and serves as Chair of the Imaging Committee for NRG Oncology.

  12:30PT/3:30ET

  4PT/7ET

Wednesday, August 24

  4 PT/7 ET
(60 minutes)

Irina Bancos

MD, Mayo Clinic Rochester

Dr Irina Bancos is the Associate Professor of Medicine and works in the Pituitary-Adrenal-Gonadal subdivision of Endocrinology division at Mayo Clinic, Rochester, USA. She also serves as the Associate Program Director for the Endocrine Fellowship. Dr Bancos received her M.D. from the Iuliu Hatieganu Medical University in Cluj-Napoca, Romania. She has completed her Internal Medicine Residency at Danbury Hospital in CT, USA and Endocrinology Fellowship at Mayo Clinic, Rochester. In addition, Dr Bancos completed a two-year research fellowship (Mayo Foundation Scholarship) at the University of Birmingham, UK where she received training in steroid profiling and adrenal disorders. In 2015 she returned to Mayo Clinic, where her clinical and research interests include adrenal and pituitary tumors, pheochromocytoma/paraganglioma, primary aldosteronism, adrenal insufficiency, congenital adrenal hyperplasia, Cushing syndrome, and mechanisms of steroid regulation of health and disease. Between 2015 and 2018, Dr Bancos was the Principal Investigator and Leader of the Transform the Adrenal Practice team at Mayo Clinic. Dr Bancos has published more than 160 scientific articles and currently holds several grants in the field of adrenal disorders.

Thursday, August 25

  9PT/noon ET

  11 PT/2 ET
(60 minutes)

Jaydira Del Rivero

MD, NIH

Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center.

Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors.

She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology.

Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials. She is also the national PI of an NCI's National Clinical Trials Network (NCTN) with the Alliance for Clinical Trials in Oncology “A Prospective, Multi-Institutional Phase II Trial Evaluating Temozolomide Vs. Temozolomide and Olaparib For Advanced Pheochromocytoma And Paraganglioma”

Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma.

Patricia Dahia

MD, PhD, UT Health, San Antonio

Patricia Dahia, MD, PhD is clinically trained in Endocrinology and Metabolism and laboratory training in Cancer Genetics, Cellular and Molecular Biology. She is a tenured Professor of Medicine at the University of Texas Health Science Center at San Antonio (UTHSCSA) and the Mays Cancer Center at UTHSCSA and the holder of the Robert Tucker Hayes Distinguished Chair in Oncology. Her career has focused on research in cancer genetics, with emphasis on pheochromocytomas and paragangliomas. Her work uncovering tumor susceptibility genes (including, SDHB, KIF1B, EPAS1/HIF2A, TMEM127, etc) has had both translational and biological impact. These studies helped define paradigms for pheochromocytoma and paraganglioma classification, genetic testing, patient surveillance, and innovative therapeutic modeling. Her team’s translational and basic research uncovered links between energy metabolism, hypoxia, endosomal/lysosomal signaling and cancer susceptibility.

She has mentored over 50 trainees, many of whom have gone on to independent careers. She have been funded by Federal, State and Private grant agencies, and she is currently funded by the NIH, Neuroendocrine Tumor Research Foundation (NETRF) and the VHL Alliance. Ongoing research with her team involves genotype-phenotype studies of pheochromocytoma, paraganglioma and other hereditary cancer predisposition, functional studies of susceptibility genes, and novel disease models, including organoids, to study these tumors.

She is also the co-Director of the recently designated PheoPara Alliance Center of Excellence at UTHSCSA.

  Noon PT/3 ET
(30 minutes)

Linda Rose-Krasnor

MASc, PhD, Pheo Para Alliance

Linda Rose Krasnor is currently a Professor Emeritus at Brock University, which is located in southern Ontario, Canada. She is a developmental psychologist, with particular research interests in social development and youth engagement. In addition to her teaching and research responsibilities, Linda served as President of the Brock faculty union and was active in the University Senate, serving terms as Chair of the Senate’s Governance and the Planning, Priorities, and Budget Advisory committees. Since becoming involved in the Pheo Para Alliance, Linda has been part of the peer support initiative, helping to develop the peer support training module and facilitating the monthly peer support calls.

Although asymptomatic, in 2009 Linda was assessed for pheocromocytoma/paragangliomas following the diagnosis of multiple paraganglomia in three close family members. Linda’s testing indicated bilateral neck paragangliomas, which subsequently were determined to be glomus vagale tumors. One was been surgically removed in 2016, with accompanying vagal nerve damage resulting in a paralyzed vocal cord and Horner’s Syndrome. With further surgery and extended speech therapy, Linda’s voice has recovered and she is being monitored yearly for growth in the remaining tumor. Linda and her family have the SDHD mutation.

In her role as a Board member and Secretary, Linda is looking forward to helping advance the important and much needed educational, support, and empowerment functions of PPA and to strengthen its critical role in promoting research into prevention, diagnosis, and treatment. She is specifically interested in increasing our understanding of the socio-emotional implications of living with pheo/para, especially for children and youth.

Linda received her B.A. in psychology from Boston University and her M.A.Sc. and Ph.D. in developmental psychology from the University of Waterloo. In addition to her work with PPA, Linda volunteers as a leader of adult and children’s bereavement groups for Hospice Niagara.

  12:30 PT/3:30 ET
(60 minutes)

Lauren Fishbein

MD, PhD, MTR, University of Colorado

Dr. Fishbein is currently an Associate Professor of Medicine at the University of Colorado School of Medicine in the Division of Endocrinology, Metabolism and Diabetes with a secondary appointment in the Department of Biomedical Informatics. Dr. Fishbein has a strong interest in personalized medicine including understanding the impact of germline predisposition genetics for endocrine tumor syndromes, as well as understanding neuroendocrine tumor development and metastatic disease. Her research program focuses on investigating the interplay between somatic and germline genetics in neuroendocrine tumors, with a focus on pheochromocytoma and paraganglioma. She has served as chair on several committees for national and international societies, including the Endocrine Society, the North American Neuroendocrine Tumor Society, and the American-Australian-Asian-Adrenal Alliance (A5) research consortium’s Pheo/Para Working Group. Her research has been funded by the American Cancer Society and the National Institutes of Health.

Roderick Clifton-Bligh

BSC, MB, FRAZP, PhD, FFSc, University of Sydney

Associate Professor Roderick Clifton-Bligh is Head of the Department of Endocrinology at Royal North Shore Hospital, and conjoint associate professor in Medicine at the University of Sydney. He completed a PhD in the genetics of thyroid disorders at the University of Cambridge. He now supervises dual research groups, one of which focuses on the genetics of endocrine neoplasms, and the other on metabolic bone disease. The Cancer Genetics Unit studies the molecular bases of thyroid cancer, phaechromocytoma/paraganglioma syndromes, adrenal cancer, and pituitary neoplasms. The Metabolic Bone Research Unit studies calcium-sensing receptor gene mutations and FGF23 biology. His scope of clinical practice remains broad. He has co-supervised 8 completed PhDs, including five Endocrinologists. He maintains a strong involvement in teaching and mentoring young physicians.

Karel Pacak

DSc, MD, PhD, NIH

Dr. Pacak is a board-certified endocrinologist and an internationally recognized expert in the diagnosis and treatment of neuroendocrine tumors, especially pheochromocytoma and paraganglioma. He graduated summa cum laude from Charles University, Prague, Czech Republic in 1984. In 1990, he began his postdoctoral fellowship at NINDS. In 1995, Dr. Pacak began his residency in internal medicine at the Washington Hospital Center under Dr. L. Wartofsky, followed by a fellowship in endocrinology, diabetes, and metabolism at NIH. In 1998, he established a new Program for Neuroendocrine Tumors focusing on pheochromocytoma and paraganglioma at NICHD. He received his Ph.D. in 1993 and his D.Sc. in 1998 in the field of neuroendocrinology from Charles University. In 2006, he was awarded a lifetime professorship in Internal Medicine at Charles University.
Dr. Pacak established the International Symposia on Pheochromocytoma. He also helped co-found a new Asian Alliance for the Study of Neuroendocrine Tumors in 2010. He is a recipient of numerous awards including the Peter Heimann Memorial Award at Yale University, International Association of Endocrine Surgeons; NIH Director’s Mentor Award, Award for Cure from Pheo Para Alliance, NICHD Director’s Award of Merit, Pincus Taft Memorial Lecture the Highest Award from Endocrine Society of Australia, and Jessenius Gold Medal from Slovak Academy of Sciences. Dr. Pacak is the author of more than 305 scientific peer-reviewed articles, 98 book chapters, and 5 books.

Erik Mittra

MD, PhD, Oregon Health & Sciences University

Dr. Mittra is a Professor of Diagnostic Radiology and Chief of Nuclear Medicine & Molecular Imaging at Oregon Health & Science University.
Dr. Mittra received his medical and graduate degrees through the joint MD/PhD program at Stony Brook University. His post-graduate training included a medical internship at Stony Brook University, followed by a residency and fellowship in Nuclear Medicine at Stanford University where he was faculty for many years before moving to OHSU in 2018.
Dr. Mittra is interested in all aspects of molecular imaging and therapy. This includes adult and pediatric general nuclear medicine imaging and PET imaging for oncology, cardiac, and neurologic applications. Targeted radionuclide therapies (TRT) are of particular interest and he is nationally recognized in this area. His research interests are primarily focused on the translation of novel radioisotopes for imaging and therapy to the clinical setting. He is very active with the Society of Nuclear Medicine and Molecular Imaging (SNMMI), the North American Neuroendocrine Tumor Society (NANETS), and the Healing NET Foundation (HNF).

Neil Patel

MD, University of Utah Health

Neil S. Patel, MD, is an Assistant Professor of Neurotology and Skull Base Surgery within the Division of Otolaryngology – Head and Neck Surgery at the University of Utah in Salt Lake City, Utah. Dr. Patel completed both his fellowship in otology/neurotology and skull base surgery and his residency training in otolaryngology – head and neck surgery at the Mayo Clinic in Rochester, Minnesota. One of his primary research interests is the management of head and neck paragangliomas, specifically glomus jugulare tumors. Several of his over 50 peer-reviewed publications are focused on outcomes following treatment of jugular paragangliomas. As a lateral skull base surgeon, he is actively involved in the multimodality treatment of skull base and neck paragangliomas as part of a multidisciplinary team at University of Utah, a Pheo Para Alliance Center of Excellence.

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