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

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 2015-2017,   150.000 USD/year

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 2015-2018,   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 2015-2018,   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 2015-2018,   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

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 2014-2020,  1.200.000 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




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