January 2016
The NBIA Alliance, an informal umbrella organization for the lay advocacy groups, recently welcomed its newest member, NBIA Suisse from Switzerland. Set up in 2012, the alliance now has eight member organizations. In addition to the Swiss and U.S. groups, they are in Canada, France, Germany, Italy, the Netherlands and Spain.
The newest alliance member, NBIA Suisse, came on board in October, 2015. Fatemeh Mollet is the founder and has three nieces with a form of NBIA known as Mitochondrial-membrane Protein-Associated Neurodegeneration, or MPAN.
Mollet’s brother and his family live in Iran, and Mollet has been trying to help them start a patient organization there. Unfortunately, the administrative process in Iran is long and cumbersome, so she launched the group in Switzerland, where she has lived for several decades.
NBIA Suisse recently started a campaign to raise funds for MPAN research, while spreading awareness and providing support to NBIA families in Switzerland and Iran. Information about NBIA is in the Persian language (Farsi) so it can be posted on the Iranian Organization for Rare Disease website.
Mollet is in touch with Dr. Mohammad Rohani, professor of neurology at the Medical University of Tehran, who is seeing NBIA patients in Iran. Professor Thomas Klopstock, principal investigator of TIRCON, and Dr. Ivan Karin from the Friedrich-Baur Institute at the Ludwig Maximilian University of Munich, visited Iran in 2015 to meet with Dr. Rohani and Iranian NBIA patients. In 2014, only 13 NBIA patients were identified in Iran, but now there are more than 50. The majority have a diagnosis of PKAN, but a large group has MPAN.
Mollet and Rohani attended the TIRCON meeting in Munich in October 2015 to meet and exchange information with the NBIA community of researchers, clinicians and patient representatives.
