Which projects we support

Currently, there is no cure for the disease. There are several methods of treatment for individual tumors, and palliative treatment once the tumors have started to spread.  It is becoming increasingly difficult for researchers to get funding for this rare disease.

We will prioritize projects that have a clear and specific purpose, a timeline and are deemed constructive in the search for a cure. These projects should already be outlined but need funding in order to proceed. The research centers need to believe in sharing research and results between institutions, and keep up to date with relevant research in both the same and related fields.

Projects we support:

Three projects conducted at the Mayo Clinic, Rochester,Minnesota,USA, by Dr Jim Maher
During 2013-2018
200.000 USD/year
During 2019-2021
100.000 USD/year
During 2022-2025

Consortium for personalized targeted therapy of SDHB-mutated metastatic paraganglioma and pheochromocytoma
Dr. Zhenping Zhuang, M.D., Ph.D.
NIH, Bethesda, MD, USA
Establishment of in vitro/in vivo model for SDHB mutation associated tumors and investigation of therapeutic strategy based on modulating protein folding and stability
During 2015-2019, 300.000 USD in total

Neural crest-derived tumors and microenvironment: an experimental model to test potential therapeutical targets and drugs in SDHB-mutated paragangliomas
Prof Massimo Mannelli, M.D
University of Florence, Florence, Italy
During 2015-2019, 530.000 EUR in total

Genomic dissection of SDHB related PPGLs to identify druggable targets and novel therapeutic strategies
Dr. Mercedes Robledo, Ph.D.
CNIO, Madrid, Spain
During 2015-2019, 420.000 EUR in total

Mitochondrial energy metabolism and downstream Hif2a MycMax pathways and epigenetic methylation as therapeutic targets for SDHB-mutated metastatic chromaffin cell tumors
Prof. Graeme Eisenhofer, Ph.D.
Prof Jens Pietzsch, Ph.D.
Technische Universität Dresden, Dresden, Germany
During 2015-2019, 630.000 EUR in total

SDHB-related paragangliomas and pheochromocytomas from succinate receptor and zebrafish to man
Dr Henri Timmers, M.D., Ph.D.
Prof Peter Deen, Ph.D.
Radboud University Medical Center, Nijmegen, The Netherlands
During 2015-2018, 750.000 EUR in total

Bridge-funding for Margo Dona, PhD
Radboud University Medical Center
During 2018-2019 45.000 Eur in total
Advisory member: Prof Jacques Lenders, M.D., Ph.D.

Models of paraganglioma: Cell lines and Mouse Models
During 2014-2018, 816.000 EUR in total
Which SDHB-SDHD missense gene variant influence serious paraganglioma-pheochromocytoma
Refining the clinical profile of SDHB&SDHD gene variants in Paraganglioma and Pheochromocytoma malignancy and comorbidity
Dr Jean-Pierre Bayley
Leiden University Medical Center, Leiden, The Netherlands

Targeting metastasizing paraganglioma by inhibiting HIF-2a transcriptional activity
Dr Sven Påhlman
Caroline Wigerup, Ph.D.
Lunds Universitet, Lund, Sweden
During 2014-2019, 1.500.000 EUR in total

Collaborative Paraganglioma and Pheochromocytoma Short-Term Fellowship at NIH
Dr Joakim Crona
Uppsala Universitet Hospital, Uppsala, Sweden
During 2016, 8.000USD in total

Collaborative research project to investigate the mechanisms of metabolic escape of SDHB defective tumors
During 2015-2018, 450.000 EUR in total
Development of a novel biomarker of tumor development in SDHB-mutated patients using in vivo metabolic tracing
During 2017-2020, 445.000 EUR in total
A program of research between Tennant and Favier research groups to develop fundamental knowledge of the metabolism of SDHB-deficient tumors for novel therapeutic targets
Dr Judith Favier, INSERM, Paris, France
Dr Daniel Tennant, University of Birmingham, UK

Suppressing the transforming effect of Succinate dehydrogenase mutations in paraganglioma inhibition of a a-Ketoglutarate Dehydrogenase
During 2017-2020 375.000 EUR in total
Born to Sense: Unlocking Vulnerabilities in malignant Paraganglioma and Pheochromocytoma using single cell technology and integrated mass spectrometry
Dr Susanne Schlisio, PhD
Ludwig Insitute for Cancer Research, KI, Stockholm, Sweden

A5 Genomic Study
Dr Richard Tothill
Peter McCullum Cancer Institute, Melbourne, Australia
During 2017-2019 100.000 USD in total

Consortium SDHB-Related Metastatic Pheochromocytoma and Paraganglioma’s: Creating the Essentials for Targeted Therapy
Prof. Hans Clevers, MD, PhD
Princes Maxima Center, Hubrecht Institute/Royal Netherlands Academy of Science, Utrecht, The Netherlands
Generation of Organoids of Human SDHB-mutated PPGLs
During 2017-2020 291.500 EUR in total

Human Renal Cells as Model System for SDHB-mutant PPGLs
Dr Henri Timmers, MD, PhD
Prof Peter Deen
Radboud University Medical Center, Nijmegen, The Netherlands
During 2017-2020 475.500 EUR in total

Mapping the metabolic Pathways Throughout Sdhb-mutated PPGLs
Dr Shane Ellis, PhD
Maastricht University,Maastricht,The Netherlands
2017-2020 181.300 EUR in total

Dissection of the Transcriptional Pathways of SDHB-mutated PPGLs
Prof Henk Stunnenberg
Radboud Universty Medical Center, Nijmegen, The Netherlands
During 2017-2020 255.600 EUR in total

Dr Stephanie Fliedner MD PhD
Universitätklinikum Schleswig-Holstein, Lubeck,Germany
During 2017-2020 19.000 EUR in total

Single cell analysis of tumor hetrogeneity and differentiation states unlocks new cancer treatments for paraganglioma and pheochromocytoma
During 2017-2020 230.000 EUR in total
Drivers of sympatho-adrenal fates control phenotypes of malignant cells in pheochromocytoma
Dr Igor Adameyko PhD
Karolinska Institutet,Stockholm,Sweden

New models of SDH-deficient Paragangliomas and Syndromically Associated Tumors
During 2017 80.000 USD
A Phenotypically valid model for SDH-deficient paragangliomas with SDHB mutation
During 2019-2020 75.000 USD
Development of novel pre-clinical testing strategies for SDH-deficient paraganglioma caused by hereditary SDHB-mutation
Dr Arthur Tischler
Tufts Medical Center, Boston, US

Zebrafish leading the way towards therapeutic targets for SDHB-related paragangliomas
Dr Henri Timmers, MD, PhD
Margo Dona PhD
Radboud University Medical Center, Nijmegen, The Netherlands
During 2019-2023 472.000 EUR in total

Treatment of a mouse model of carotid paraganglioma with the HIF-2a antagonist PT2385
During 2019-2022 393.000 GBP in total
Investigating the developmental origins of HIF-2a driven paragangliomas
Prof Sir Peter J Ratcliffe
Dr Tammie Bishop
University of Oxford, Targeted Discovery Institute, Oxford, UK

Creating a Pheochromocytoma and Paraganglioma Tumor Dependency Map
Collaboration between The Broad Institute, The Paradifference, The Pheo Para Alliance and SDHB Coalition Inc.
The Broad Institute, Boston, US
During 2019-2022 112.000 USD in total

Integration of multi-omics profiling and immune con texture in metastatic PPGL-patients
Mercedes Robledo, Head of the Hereditary Endocrine Cancer Group
Fatima Al-Shahrour, PhD
CNIO Madrid

Plasma cell-free DNA(cfDNA) sequencing to characterize the genomic profile of advanced metastatic pheocgromocytoma and paraganglioma
Detection and monitorization of genetic markers for metastasis in PPGL-patients using non-invasive liquid biopsy assay
Rodrigo Toledo, PhD, VHIO, Barcelona

Generation of novel tools for the study and development of targeted therapeutic approaches for pheochromocytoma and paraganglioma
Dr Cynthia Andoniadou
King’s College, London

Cellular stress responses as therapeutic targets in SDHB diseases
Prof Paul Chapple
Queen Mary University of London

Development of stable, metastatic paraganglioma organoids to study evolution and drug response of aggressive tumors
Patricia Dahia, MD PhD, UTHSA
Alice Soragni, PhD, UCLA
Camilo Jimenez, MD, MDACC

These projects are supported by:
The Gustavsson family
BKS- Berta Kamprad Stiftelse
Jonas and Christina af Jochnick Foundation
Family friends