About us

NBIA Suisse is the Swiss patient advocacy association and self-help group for NBIA diseases (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 want 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 are 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 with associations in Canada, France, Germany, Italy, Netherlands, Spain, Hungary, Poland and USA.

This international network allows access to the latest knowledge and we intend to report here on all aspects and the latest research results of the NBIA disorders. As well, we do hope to give awareness and emotional encouragement to patients and their parents.

Together with these worldwide partners, we want to achieve

  • public attention for the existence of these rare diseases,
  • financial support for the search for treatment,
  • a future cure for all forms of NBIA.

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.

Our commitee members are

Fatemeh Mollet

Fatemeh Mollet

(Chair)
"Rare disorder, scarce interest and funding are the main obstacle to treatment.
The involvement of patients and their families is necessay 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 to find the other pieces of puzzle for the other common Brain Neurodegeneration through new discoveries and innovations in the future. Mostly, I believe that my commitment along with everyone else, finding a cure for NBIA will be possible.”

Olav Zilian

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 while 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 academic 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

Jonathan Deglise

(Treasurer)
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Esther Schäer

Esther Schäer

(Communication)
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Patrick Herren

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 right 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.

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.
  • Dr. Arcangela Iuso tested about 150 FDA approved drugs in this model and identified 14 positive hits. Based on these positive results NBIA Suisse continued to support this project in May 2018 with another grant for a PhD position to further examine the identified hits in a new established model based on patient derived human cells.
  • Work is ongoing to define measureable clinical endpoints and to set up a plan for a clinical trial in MPAN patients.

 

Please contact us if you have difficulties finding information (nbiasuisse@gmail.com). We will be happy to take your questions and provide information.

Our Network

The NBIA Disorders Association is an organization in the United States providing specific support, information and services for NBIA disorders.

·        NBIA Families and Friends

 

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

·        UniRares association Suisse de patients isolés

·        Blackswan Foundation scientific conferences on rare disease 

 

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