News 2006

First International Symposium on Pheochromocytoma

The First International Symposium on Pheochromocytoma was held in Bethesda, Maryland, on October 20-23, 2005. Dr. Graeme Eisenhofer and Karel Pacak of the National Institutes of Health organized and co-chaired this meeting, which included 180 participants from all over the world. Many patients also attended this conference. The first two days were dedicated mainly to scientific presentations on several topics. Later there were less formal gatherings of patients and support group members. Participants at this symposium were informed of the latest scientific discoveries and advances in genetics, diagnosis, localization, and pathogenesis of pheochromocytomas and paragangliomas, and the management and treatment of patients with these tumors.

This symposium helped create a better awareness of the need for consensus evidence-based guidelines for effective biochemical diagnosis, localization, and treatment of benign, malignant and other forms of pheochromocytoma. It was also an excellent opportunity for the exchange of information between researchers, physicians, support organizations and patients.

The conference focused on several goals with respect to diagnosis of pheochromocytoma. There is a need to raise the awareness of the existence of the illness, the symptoms, and the availability of biochemical tests. In addition, there was discussion of the need for agreement on diagnostic criteria, especially where diagnostic testing in concerned.

Topics at the symposium included:

  •  Genetics
  • Pheochromocytoma/paraganglioma syndromes
  • Molecular pathways of tumorigenesis
  • Genotype-phenotype relationships
  • Clinical presentation and differential diagnosis
  • Biochemical diagnosis
  • Tumor localization
  • Management of pheochromocytoma
  • Model systems
  • Diagnostic and prognostic markers of malignant pheochromocytoma
  • Treatment of malignant pheochromocytoma
  • Patient support

In conclusion, there were discussions about the future directions of research, how to improve funding and support for research on the tumor, and business of the Pheochromocytoma Research Support Organization (PRESSOR), including the venue and organizers for a subsequent international meeting.

The next conference is scheduled to be held in Cambridge, England in 2008.

News 2005

ISP2005 — First International Symposium on Pheochromocytoma
Where: Bethesda, Maryland, USA
When: October 20 – October 23, 2005

October 2005 brought to Bethesda MD a gathering of some of the “best minds” in pheochromocytoma. The First International Symposium on Pheochromocytoma was held.

Several members from the Pheochromocytoma Support Board and Pheochromocytoma Organization represented our group at this symposium, and gave presentations on what our group has to offer in the form of information and support.

Organizers of this symposium are looking for some patients who would be willing to share some of their stories.

Persons with malignant pheochromocytoma, parents of children with pheochromocytoma, and those who have genetic pheochromocytoma. If there are any members who may be interested in sharing their stories with our group please contact Debra Harlander or Mary Peebels.

ISP2005 — First International Symposium on Pheochromocytoma

Goals

The Symposium provided an international forum for bringing together for the first time a significant number of investigators, clinicians, and other healthcare professionals from around the world, all with a common interest in pheochromocytoma. This facilitated the forging of new and improved collaborations, inter-disciplinary studies, and concerted, comprehensive approaches to resolving the outstanding scientific and medical problems associated with pheochromocytoma. The Symposium also provided a forum for patients to strengthen their support groups and improve awareness and understanding of the tumor and associated conditions by all involved parties, including those responsible for setting research priorities and funding decisions.

Format

The Symposium was held over two and half days, the first two days dedicated to oral scientific presentations on several themes in 8 sessions. There were poster sessions in the evenings and the symposium had a strong social format to encourage informal meetings and discussions. Patient support group representatives provided presentations about their organization and what they and their members see as pressing issues requiring assistance from the research and medical communities. The last half-day was dedicated to moderator-led discussions about future directions of research, proposals for multicenter interdisciplinary studies, how to improve funding and support for research on the tumor, and business of the Pheochromocytoma Research Support Organization (PRESSOR), including the venue and organizers for a subsequent international meeting.

Topics

Topics covered in the symposium include:

  • Genetics
  • Pheochromocytoma/paraganglioma syndromes
  • Molecular pathways of tumorigenesis
  • Genotype-phenotype relationships
  • Clinical presentation and differential diagnosis
  • Biochemical diagnosis
  • Tumor localization
  • Management of pheochromocytoma
  • Model systems
  • Diagnostic and prognostic markers of malignancy
  • Treatment of malignant pheochromcytoma
  • Patient support

Emphasis will be on selection of oral presentations of new and important unpublished findings. For the most part, oral presentations of 10-15 minutes duration (with 5 minutes for questions) will be selected from submitted abstracts. Where appropriate, sessions may also include invited overviews of the subject area from authorities in the field or moderator-led discussions from panelists and the audience.

ISP 2005 Organizers

  • Karel Pacak – President
  • Graeme Eisenhofer – Secretary General

ISP 2005 Local Organizing Committee

  • Karen T Adams – NICHD, NIH
  • Fredereike Brouwers – NICHD, NIH
  • Graeme Eisenhofer – NINDS, NIH
  • Abdel G Elkahloun – NICHD, NIH
  • David S Goldstein – NINDS, NIH
  • Stephen C Groft – ORD, NIH
  •  Karel Pacak – NICHD, NIH
  • Giovanna Spinella – ORD, NIH
  •  MacClellan M Walther – NCI, NIH

ISP 2005 International Organizing Committee

  •  Håkan Ahlman – Sweden
  • Diana Benn – Australia
  • Stefan Bornstein – Germany
  • Patricia Dahia – USA
  • Ronald De Krijger – Netherlands
  • Paul A Fitzgerald – California
  • Thomas J Giordano – USA
  • Ashley B Grossman – UK
  • Anna A Kasperlik-Zaluska – Poland
  • Noriko Kimura – Japan
  • Otto Kuchel – Canada
  • Hendrik Lehnert – Germany
  •  Jacques WM Lenders – Netherlands
  • William M Manger – USA
  • Massimo Mannelli – Italy
  • Hartmut PH Neumann – Germany
  • Pierre-François Plouin – France
  • Barry L Shulkin – USA
  • Arthur Tischler – USA
  • Sergio P Toledo – Brazil
  • William F Young Jr – USA

Support

  • National Institute of Child Health and Human Development, NIH
  • National Cancer Institute, NIH

News 2004

Study by Dr. Samuel J. Mann
Associate Professor of Clinical Medicine
The New York Presbyterian Hospital/Weill Cornell Medical Center

Study was done to test a new, promising treatment for paroxysmal (episodic) hypertension.

The study was conducted by Dr. Samuel J. Mann, an Associate Professor of Clinical Medicine at The New York Presbyterian Hospital/Weill Cornell Medical Center in New York City.

This study is completed, and permission has been granted by Dr. Mann to share:

Study for Treatment for Paroxysmal (episodic) Hypertension