News 2016

NIH Conference/Alliance Fundraiser

The 4th Annual International Patient Symposium for Pheochromocytoma

“The 4th Annual International Patient Symposium for Pheochromocytoma at the Katzen Arts Center of American University in Washington, DC on May 13th and 14th, 2016.

The two day conference is free of charge (Register Here), will run from 7:00AM-3:00PM, and includes both breakfast and lunch each day.

The conference ends with a culminating event, the PheoPara Alliance Spring Cancer Benefit, on the evening of May 14th, 2016.”

Complete Information at Link:

NIH Conference/Alliance Fundraiser @ http://www.pheoparatroopers.org/events/nih-conferencealliance-fundraiser/

News 2015

The 3rd Theranostics World Congress (3TWC) March 12 – 14, 2015
John Hopkins University

“The Congress, Co-sponsored by the Society of Nuclear Medicine and Molecular Imaging (SNMMI) and Johns Hopkins Medicine, is intended for chemists, physicists, technologists, physicians and all scientists and clinicians interested in translational research and current state-of-the-art molecular imaging using 68Ga PET radiopharmaceuticals and radionuclide therapy. The increase in enthusiasm for 68Ga use over the last several years can be ascribed to several factors, some of which promise an increasing role for 68Ga as a tool in both diagnostic and therapeutic applications such as theranostics. The term “theranostics” symbolizes the inseparability of diagnosis and therapy and has a profound effect personalized disease management.

Although widely used in Europe, 68Ga PET radiopharmaceuticals have only been used in the US in investigational trials under INDs. With the potential of an approved agent available in the US in the near future, this conference is particularly useful to those who are new to this class of agent and want to hear more about it. A team of experts from around the world present their research and discuss updates in this exciting and evolving field. Presentations on clinical applications and patient advocacy are new to this Congress, providing a unique perspective for attendees.”

Information about Agenda Outline and Program Committee:
The 3rd Theranostics World Congress (3TWC)

News 2014

ISP 2014 in Kyoto

International Symposium on Pheochromocytoma and Paraganglioma

Link to Website: http://www.isp2014.jp/

2014 NIH Pheo & Para Patient Conference June 26-27, 2014

Link to Information on Pheochromocytoma Support Board:

http://pheochromocytomasupportboard.yuku.com/topic/6001/2014-NIH-Pheo-Para-Patient-Conference-June-2627-2014#.U42BOijEllw

The NIH is holding their third annual Pheo & Para Patient Conference where the experts will share their latest research with you.

Where – National Institutes of Health, Bethesda, MD

News 2013

In the News 2013 and beyond:

ISP 2014 in Kyoto

International Symposium on Pheochromocyto and Paraganglioma

Link to Website:  http://www.isp2014.jp/

Free Seminar: Living with Multiple Endocrine Neoplasia 2013

This seminar is free to all who wish to attend. Since Multiple Endocrine Neoplasia often includes pheochromocytoma and paraganglioma as health issues, many persons within our group may benefit directly or indirectly. This announcement is from Vanderbilt University Medical Center. Here is some basic information:

  • Where: First Tennessee Conference Center
    Monroe Carell Jr. Children’s Hospital at Vanderbilt, Room 2210
  • Address: 2200 Children’s Way, Nashville, TN 37232
  • When: Saturday, Sept. 14th 8:00am-3:00pm
  • Link: http://www.vanderbilthealth.com/main/43139

Second Annual International Patient Symposium on Pheochromocytoma and Paraganglioma

This event was held 06/20/2013 – 06/21/2013

Pheochromocytoma and paraganglioma patients, loved ones, and healthcare professionals were invited to attend this symposium scheduled for June 20-21, 2013, NIH campus, The Cloisters in Bethesda, Maryland. There was no charge for attendance for patients but registration was required.

Among the topics to be covered were:

  • Anatomical and Functional Imaging
  • Genetics, Pregnancy and Pheochromocytoma
  • Surgery of Pheochromocytomas and Paragangliomas
  • Radiofrequency Ablation
  • Chemotherapy and Other Approaches to Treatment of Metastatic Pheo/Para
  • Radionuclide Therapy of Metastatic Pheo/Para
  • Pain Management
  • Nutrition
  • Nurturing the Family’s Resilience in Times of Crisis, and Patient Navigators
  • The opening welcome was given by Alan E. Guttmacher, Director of NICHD.
  •  Internationally recognized pheochromocytoma and paraganglioma specialist, Dr. Karel Pacak, talked about “Pheo Para Research – Recent Achievements and Future Visions.”
  •  The Symposium will also include presentations by Margarita Raygada PhD, Dr. Jacques Lenders, Dr. Marybeth Hughes, Dr. Philip Corcoran, Dr. Aradhana Venkatesan, Dr. Tito Fojo, Dr. Jorge Carrasquillo, Laura Pole MSN, Dr. Jeff D. White, Cynthia R. Ronzio PhD, Julie Hoehl, and from the NICHD National Center for Neuroendocrine Tumors, Kathryn King, Victoria Martucci, Jaydira Del Rivero, and Isabel Garcia.
  • The program features experts in many fields. Some of these experts include: Dr. Merino, MD, Pathology; Dr. Sandler MD, Children’s hospital surgeon; multiple cardiologists; Dr Hughes, MD, Surgeon; Dr Fojo, MD, Oncology; Dr Carrasquillo, MD, Sloan Kettering Nuclear Medicine; Dr Pacak, MD, endocrinology; Dr White, MD, NCI ALternative Medicine; Laura Pole, Nutrition and pain control; Cynthia Ronzio, PhD, care of the family, and so much more.

 

News 2012

What Made the News in 2012

International Symposium on Pheochromocytoma:
Working Together Today For A Better Tomorrow

Symposium was held June 28, 2012 – June 29, 2012

Sponsor/Co-Sponsor(s): NICHD, ORDR

Location: Omni Shoreham, Washington, DC

Purpose: The conference was unique in that both adult and pediatric issues were addressed, while giving primary care providers a complete picture of the disease and the opportunity to meet many patients, families, and researchers from around the world.

The international researchers helped to enlarge the knowledge base for diagnosing and treating Pheochromocytoma and Paraganaglioma in both pediatric and adult patients.

News 2011

What Made the News in 2011

Pheo Para Alliance Gala 2011 : http://pheochromocytomasupportboard.yuku.com/topic/5428/Pheo-Para-Alliance-Gala-2011-Note-Completed#.UftERm0YEms

VHL Family Alliance Conference : http://pheochromocytomasupportboard.yuku.com/topic/5433/VHL-Family-Alliance-Conference-Note-Completed

Third International Symposium: Pheochromocytoma and Paraganglioma : http://www.pressor.org/links/isp.php
Pheochromocytoma and Paraganglioma

Symposium : http://pheochromocytomasupportboard.yuku.com/topic/5450/Pheochromocytoma-Paraganglioma-Symposium-Note-Completed#.UftJam0YEms

News 2010

What Made the News in 2010

George C. Lin Memorial Fund

The George C. Lin Memorial Fund has announced their continued involvement in both DC APA Film and SDAFF for 2010. When he was eighteen years old, George was diagnosed with pheochromocytoma. He passed away October 14, 2008, at the age of 37. George accomplished a great deal in his life.

The George C. Lin Memorial Fund was established by his family to provide grants to institutions which provide scholarships to students studying film, and for pheochromocytoma research and awareness.

Here is the Facebook tribute to him: George C. Lin

We’ve been given permission to post links involving George C. Lin and the Memorial Fund. Here is a link to the Fund’s charitable activities: George C. Lin Memorial Fund

Please be sure to visit these sites and read about his story, and the goals of the memorial fund established in his name.


Study: Malignant Pheo, Paraganglioma, Metastatic Carcinoid

Molecular Insight Pharmaceuticals, Inc. has conducted a clinical trial to benefit patients with certain types of pheochromocytoma, paraganglioma or metastatic carcinoid tumors.

Update: This study is ongoing, but not recruiting participants.

News 2009

What Made the News in 2009

Study: Malignant Pheo, Paraganglioma, Metastatic Carcinoid

  • Molecular Insight Pharmaceuticals, Inc. has conducted a clinical trial to benefit patients with certain types of pheochromocytoma, paraganglioma or metastatic carcinoid tumors.
Note: This study is ongoing, but not recruiting participants.

The Pheo-Para Alliance announced a conference to be held in Parsippany, NJ on September 30 through October 2, 2009.

  • Dr. Karel Pacak was the main speaker on Pheochromocytoma: An overview of Research Achievements.
  •  Pheo-Para Alliance

Ann N Y Acad Sci. Author manuscript; available in PMC 2009 December 1.
Published in final edited form as:
Ann N Y Acad Sci. 2008 December; 1148: 462–468.
doi:  10.1196/annals.1410.081
PMCID: PMC2693284
NIHMSID: NIHMS66489

  • Pheochromocytoma: An Endocrine Stress Mimicking Disorder
  • Vitaly Kantorovich,1 Graeme Eisenhofer,2 and Karel Pacak3
The publisher’s final edited version of this article is available at Ann N Y Acad Sci
Abstract

Pheochromocytoma is an endocrine tumor that can uniquely mimic numerous stress-associated disorders, with variations in clinical manifestations resulting from different patterns of catecholamine secretion and actions of released catecholamines on physiological systems.

Free full text  Author Manuscript:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2693284/

News 2008

The 2nd International Symposium on Pheochromocytoma – September 2008

The 2nd International Symposium on Pheochromocytoma was held at Queens’ College in Cambridge, UK, 17th – 20th September 2008.

Co-chairs: Morris J. Brown, Ashley B. Grossman

  • Target Audience: Scientists, physicians, radiologists, pathologists, nuclear medicine physicians and other healthcare professionals (e.g., genetic counsellors, nurses) working in the fields of endocrinology, oncology, hypertension, genetics or with specific interests in basic or clinical research about catecholamine-producing tumours.

The symposium was also open to patients, their family members, and patient support group representatives.

  • Educational Objectives: Participants will learn about the latest scientific discoveries and advances in genetics, diagnosis, localisation and pathogenesis of pheochromocytomas and paragangliomas, and the management and treatment of patients with these tumours.

The 1st meeting of the International Symposium on Pheochromocytoma was hosted by colleagues at NIH in Bethesda, Maryland in 2005, and was attended by scientists, clinicians of all disciplines, other healthcare professionals as well as patients and patient support group representatives. This first 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.


Ann N Y Acad Sci. 2008 Dec;1148:469-78. doi: 10.1196/annals.1410.019.
Unexplained symptomatic paroxysmal hypertension in pseudopheochromocytoma: a stress response disorder?

Eisenhofer G, Sharabi Y, Pacak K.
Department of Medicine and Clinical Chemistry, University of Dresden
Dresden, Germany.

Abstract

  • Among overall numbers of patients tested for pheochromocytoma, less than 2% harbor the tumor. Among the rest, there is often no satisfactory explanation for the signs and symptoms leading to suspicion of pheochromocytoma. This group includes patients with severe symptomatic paroxysmal hypertension, often referred to as pseudopheochromocytoma, a condition that can be debilitating for patients and perplexing for clinicians.
  • Similar to patients with the real tumor, patients with pseudopheochromocytoma can be misdiagnosed with panic disorder. However, pseudopheochromocytoma is characterized by an absence of panic or emotional distress preceding the onset of hypertension and symptoms of catecholamine excess. Because the clinical manifestations of pseudopheochromocytoma are similar, if not identical, to those due to excess circulating catecholamines in patients with the tumor, the most attractive explanation for the disorder is that it involves altered function of the autonomic nervous system.
  • In line with this hypothesis, recent findings suggest that enhanced adrenal release of epinephrine and exaggerated cardiovascular responsiveness to catecholamines both contribute to the paroxysmal hypertension and symptoms of catecholamine excess in pseudopheochromocytoma. From this pattern, one would predict that therapeutic interventions that inhibit adrenal secretion of epinephrine or block adrenoceptor-mediated responses to catecholamines might provide a logical approach to therapy.

PMID: 19120143 [PubMed – indexed for MEDLINE
http://www.ncbi.nlm.nih.gov/pubmed/19120143

News 2007

Second Annual Conference on Pheochromocytoma

Second Annual Conference on Pheochromocytoma
September 28-29, 2007
DoubleTree Hilton, Bethesda, Maryland

This was a 2-day conference provided free of charge for all persons interested in the diagnosis and treatment of pheochromocytoma. The conference was specifically designed to provide useful and current information yet is large enough to provide a useful cross-pollination of ideas amongst all participants. The event provided face-to-face interaction between patients and leading physicians, scientists and other medical personnel focusing on pheochromocytoma research and included:

  • Updates on current biochemical diagnosis, imaging, genetics, treatment options, and future plans
  • Breakout question/answer sessions with face-to-face meetings with the leading pheochromocytoma experts
  • Facilitated workshops sponsored dinner events will provide opportunities for all participants to meet and discuss challenges and opportunities with other conference attendees
  • Sponsored dinner events

National Institutes of Health Researchers Study:
Patients with Pseudopheochromocytoma

  • Sympathoadrenal function in patients with paroxysmal hypertension. Patients with pseudopheochromocytoma exhibit a pattern of normal sympathetic noradrenergic outflow, adrenomedullary activation, and augmented blood pressure responses to changes in the sympathoneural release of norepinephrine.
  • PMID: 17921824 [PubMed – indexed for MEDLINE

Link to Study Information and Conclusions:
http://www.ncbi.nlm.nih.gov/pubmed/17921824