> Organization of the 7th RE(ACT) Congress 2023 (Brochure; Photos)


Annual report 2022


> Organization of the 6th RE(ACT) Congress 2021 (online)

Annual report 2021


Annual report 2020


> Organization of the 5th RE(ACT) AMERICA Congress 2019, the first time in America (Brochure; Photos).

Annual report 2019

2017 et 2018

> Organization of the 4th RE(ACT) Congress 2018 (Brochure; Photos).

> BLACKSWAN Foundation & FOXG1 Research Team

FOXG1 Research is a special team of the BLACKSWAN Foundation that supports research on FOXG1 syndrome. In collaboration with the BLACKSWAN Foundation, the FOXG1 Research team works to raise funds and establish a network of researchers who work synergistically to identify innovative therapeutic strategies for FOXG1 syndrome.

Granted Projects (2018-2019):

1. Correcting FOXG1 loss-of-function in post-natal animals. Identification of the etiology of FOXG1 syndrome and the targets for drug discovery.

PI: Dr Soo-Kyung Lee – Oregon Health and Sciences University (Portland, USA).

Budget: USD 150’887

2. FOXG1 as target for Autism. Gene targets of FOXG1 in human brain progenitors.

PI: Dr Flora Vaccarino –  Yale University (New Haven, USA)

Budget: USD 130,641

3. RNA Gene Therapies for FOXG1 missense mutations. Developing an integrated platform for scalable, etiopathogenic-clinical profiling of subtle FOXG1 mutations and experimental, RNA-drive rescue of their histopathogenic effects

PI: Dr Roberta Cilio – UCSF (USA) and Dr Antonello Mallamaci at SISSA (Trieste, Italy)

Budget: USD 125’000

4. RNA gene therapy to correct FOXG1 symptoms in iPS cells. Assessing the therapeutic potential of small activating RNAs in a patient-derived cellular model of FOXG1 syndrome

PI: Dr Angus Clarke – Cardiff University (Cardiff, UK)

Budget: USD 85,665

5. FOXG1 gene therapy using CRiSPR/Cas9 technology and AAV9 system in iPSCs-derived neurons

PI: Dr. Alessandra Renieri – University of Siena (Siena, Italy)

Budget: USD 185’000 (crowdfunding project via the RE(ACT) Community)

6. Establishing and characterizing eight mouse model lines enabling researchers and biotechnology companies to trial therapies for FOXG1 Syndrome (FS)

PI: Dr. Jae Lee, Oregon Health And Sciences University (OHSU)  (Portland, USA).

Budget: USD 175’000

More information about the project here.

Annual report 2017 

Annual report 2018


The online RE (ACT) Community gets out of phase beta and is fully operational. Several crowdfunding projects are active.

Organization of the 3rd RE(ACT) Congress 2016 (Abstract book; Photos).

#RAREvolution campaign ongoing.

Annual report 2016


Launch of the international program “#RAREvolution – Stand Up for Scientific Research on Rare Diseases” (to support scientific research on rare and orphan diseases). We continue the development of the “RE(ACT) Initiative” which aims to support long-term research through tools facilitating knowledge sharing, exchange of good practices, collaboration and crowdfunding for researchers. We integrate in the program advocacy and awareness raising activities for scientific research.

Annual report 2015


Start of the “RE (ACT) Initiative”, a program that aims to support long-term research through tools facilitating knowledge sharing, exchange of good practices, collaboration and crowdfunding. The initiative’s online platform “RE(ACT) Community” facilitates continuous collaboration between researchers, information gathering, crowdfunding and communication between patients and researchers. The “RE(ACT) Initiative” also includes an international scientific congress on rare diseases, the “RE(ACT) Congress”.

Organization of the 2nd RE(ACT) Congress 2014 (Abstract book; Photos)

Annual report 2014 (EN)

Annual report 2013 (EN)


The beginning of the “RE (ACT) Congresses”, a series of conferences held every two years, bringing together researchers from around the world working on rare and orphan diseases.

Funding of a project on sleep disorders and narcolepsy, at the University of Lausanne, Switzerland. The aim of the project was to generate induced pluripotent stem cells (iPSC) from mice and human fibroblasts to investigate the neurobiology of hypocretin neurons and to demonstrate that cell therapy can be used in cases of narcolepsy, a chronic sleep disorder.

Organization of the first edition of the RE(ACT) Congress 2012 (Abstract bookPhotos).

Annual report 2012


Funding of a research project at the Harvard Medical School on atypical Rett Syndrome (central nervous system development disorder with convulsions in the first months of life). The aim of the project was to better understand the implication of the CDKL5 gene and to test several molecules to reduce drug-resistant epileptic seizures in these young children.

Annual report  2010-2011


Support of a research project at the Pediatric Surgery Department of the Children’s Hospital of Geneva (thanks to the generous gift of AEMO – Association Enfance et Maladie Orphelines). The aim of the project was to find an alternative to liver transplantation in small children in the case of rare metabolic diseases. The results have opened the way to new clinical studies for the treatment of hereditary metabolic diseases of the liver.