About us
NBIA Suisse is the Swiss patient advocacy association and self-help group for families and patients affected by an NBIA disease (neurodegeneration with brain iron accumulation).
Do you have a diagnosis of NBIA, or do you care for a person close to you with an NBIA disorder? Are you a physician or researcher, or do you simply wish more information about these disorders? Then you are at the right place with NBIA Suisse!
NBIA Suisse was founded in 2015 in Lausanne/Switzerland by a Swiss-Iranian family. Three nieces living in Iran were found in those days to be affected by MPAN (Mitochondrial-membrane Protein-Associated Neurodegeneration), a subtype of NBIA. NBIA Suisse works closely with NBIA Iran and is since 2015 member of the international NBIA Alliance that has affiliated associations in Canada, France, Germany, Italy, Netherlands, Spain, Hungary, Poland and USA.
This international network allows to have access to the latest knowledge. It is our intention to report here on all aspects and the most recent research results and understanding of the NBIA disorders. In addition and equally important to us, we do hope to raise awareness of these young patients their parents and give them emotional encouragement.
Together with our worldwide partners, we want to achieve
- Increased public attention for the existence of this form of rare diseases,
- Substantial financial support for the research toward a therapy, while
- A future cure for the various forms of NBIA would be our vision, possibly by a gene therapy.
NBIA Suisse is a nonprofit association founded in 2015 and is exonerated from Swiss taxes. Donations are – according to your local law – deductible from your income.
Current support
Currently, NBIA Suisse focusses on the support of research for a treatment for MPAN.
- The research group of Prof. Holger Prokisch from the “Institut für Humangenetik” at the Helmholtz Center in Munich reported in 2011 (Absence of an Orphan Mitochondrial Protein) on a gene mutation responsible for MPAN. Based on this finding they were able in 2014 to establish a Drosophila model for the disease. NBIA Suisse provided funding for a post doc project that used this Drosophila model to screen for molecules that could become drug candidates for treating MPAN patients.
- Dr. Arcangela Iuso tested about 150 FDA approved compounds in this model and identified 14 positive hits. Based on these positive results, NBIA Suisse continued to support this project from May 2018 with another grant, which is for a PhD position to further examine the identified hits in another Drosophila model, as well as in a newly established model based on patient derived human cells.
- In addition, there is work ongoing to define measureable and quantifiable clinical endpoints that will be useful for assessing efficacy of drug cadidates in MPAN patients; such endpoints shall be used in a planned clinical trial assessing one or more drug cadidates in MPAN patiens.
Please feel free to contact us if you have difficulties in finding further information you have been searching for (nbiasuisse@gmail.com). We are happy to take your questions and look forward to following up with you. .
Our commitee members are
Fatemeh Mollet
(Chair)
"Rare disorder, scarce interest and limited funding are the main obstacle to finding a new treatment.
The involvement of patients and their families is necessary to advance research and fundamental to produce a concrete improvement in the quality of life of patients still without hope of a cure.
Although NBIA are rare disorders, it is obvious to me as a scientist that the path to find a cure may help find the other missing pieces in the puzzle of the more common neurodegeneration brain diseases,ultimately improving therapy also here. I am confident that with my personal commitment and joining that of our families scientist and clinicians, and numerous members of our international network, finding a cure for NBIA will be possible.”
Olav Zilian
(Vice-chair)
"NBIA-related diseases are extremely burdening to patients and, at the same time, so rare that they represent a very high unmet medical need as they keep escaping the attention of most doctors and, definitely, the pharmaceutical industry. I hope, therefore, my professional backgropund allows me to provide NBIA Suisse and its research partners with some educated guesses and, at the best, advice on how to search for and potentially identify drug candiates for treating these young patients."
Jonathan Deglise
(Treasurer)
"NBIA Suisse refuses to let NBIA children alone in their brave fight for life. Our team of leading scientists is here to support these children by conducting scientific researches aiming at finding a cure and a treatment. At best, we find a cure, at worst, we give them hope."
Esther Schärer
(Volunteer)
Patrick Herren
(father of a BPAN child)
"NBIA changes the life of a whole family. The parents mostly know more about the disease than doctors or neurologists. Our affected children deserve to have someone fighting for their desire to find a cure!"
They have professional expertise in medicine and scientific research and assess promising research projects for the NBIA diseases and their feasibility.
Our Network
The Swiss Medial Centers
- CHUV neuropediatry and neurology department
- Inselspital Bern
- Universitätskinderspital Zürich
- Basler Kinderspital
- Hôpital universitaire HUG Genève
The rare disease Swiss partners
- Proraris
- Helpline rare disease Universitätskinderspital Zürich
- Blackswan Foundation scientific conferences on rare disease
- Swiss Registry for Rare Diseases (SRSK)
The international rare disease partners
- NBIA Alliance
- ERN european reference Network
- Eurordis
- National Organisation for Rare Disorders NORD
- The worldwide NBIA network, the global map of NBIA reference center