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

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

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

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

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

Dr Henri Timmers, M.D., Ph.D.
Prof Peter Deen, Ph.D.
Radboud University Medical Center, Nijmegen, The Netherlands
‘SDHB-related paragangliomas and pheochromocytomas from succinate receptor and zebrafish to man’
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
Dr Jean-Pierre Bayley
Leiden University Medical Center, Leiden, The Netherlands
During 2014-2018,  816.000 EUR in total


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
Dr Judith Favier, INSERM, Paris, France
Dr Daniel Tennant, University of Birmingham, UK
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


Suppressing the transforming effect of Succinate dehydrogenase mutations in paraganglioma inhibition of a a-Ketoglutarate Dehydrogenase
Dr Susanne Schlisio, PhD
Ludwig Insitute for Cancer Research, KI, Stockholm, Sweden
During 2017-2020  375.000 EUR in total


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

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

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

Prof Henk Stunnenberg
Radboud Universty Medical Center, Nijmegen, The Netherlands
‘Dissection of the Transcriptional Pathways of SDHB-mutated PPGLs’
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’
Dr Igor Adameyko PhD
Karolinska Institutet,Stockholm,Sweden
During 2017-2020  230.000 Eur in total

New models of SDH-deficient Pragangliomas and Syndromically Associated Tumors
Dr Arthur Tischler
Tufts Medical Center, Boston, US
During 2017  80.000 USD
A Phenotypically valid model for SDH-deficient paragangliomas with SDHB mutation
During 2019-2020  75.000 USD

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
Prof Sir Peter J Ratcliffe
Dr Tammie Bishop
University of Oxford, Targeted Discovery Institute, Oxford, UK
During 2019-2022  393.000 GBP in total

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











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