NBIA aims at financing the scientific research targeting all forms of NBIA, and at supporting children suffering from NBIA. NBIA is a group of rare, inherited neurological diseases. The most common genetic forms of the disease are PKAN, MPAN, PLAN and BPAN. The common characteristic of all forms of NBIA is the abnormal deposition of iron in the basal ganglia of the brain. Subsequently patients affected by NBIA suffer progressive movement disorders. NBIA Suisse is financing the scientific research related to the MPAN form of NBIA. This rare disease is present on all continents, it was observed and described for the first time in 1922. For children born in good health the symptoms appear gradually. Their state degenerates very slowly leaving the child in excruciating pain until their death. The families witness the suffering of their loved one and are helpless to do anything about it over the years. Yet, unfortunately it does not attract the interest of public funding of research. By promoting research into NBIA there is the potential to gain new insight into other neurodegenerative diseases such as Parkinson or Alzheimer. The consequences of NBIA are usually severe disability. The symptoms and progression of the disease vary depending on the genetic form. Dystonia (motor disorder) is the most common symptom. In the early phases the symptoms are developmental delays, balance disorders, fine and gross motor problems, problems of coordination and speech disorders. In the later phases of the disease patients often develop strong dystonia (very strong muscle cramps) as well as spasticity, symptoms similar to those found in Parkinson's disease (tremor , rigidity and slow movements ) or similar symptoms to those presented at a chorea (involuntary movement), severe psychiatric disorders and ophthalmologic problems. Become a member of our association today! Help us save lives and offer the hope to helpless parents of these suffering children. Our goal is to collect funds from those affected by NBIA either directly or indirectly as well as the wider community. The funds will be used to support international medical research for an effective treatment for patients affected by NBIA and to contribute to a better quality of life for the patients and their families. For these reasons we appeal to your generosity and ask you to support the research project on MPAN planned over the next 5 years to ensure that we can secure the necessary funding. Your donations helps to support families affected by NBIA and give them hope to move forward in their life. Each donation is a step forward and a contribution to progress research in this area. To donate via Visa, MasterCard, on any other credit cards, click the ''Donate'' tabs on the homepage of ''NBIA Suisse''. To donate via our bank account :
Suisse Franc:
Donations can be transferred to the account: NBIA Suisse
Banque Cantonal Vaudoise BCV
IBAN: CH20 0076 7000 E537 1148 7
Euro:
Donations can be transferred to the account: NBIA Suisse
Banque Cantonal Vaudoise BCV
IBAN: CH04 0076 7000 L537 1179 0
Thank you in advance and please accept our best regards,
“NBIA SUISSE stands for hope"
