Archive News 2013

The Finnish Neuromuscular Disorders Association represents mitochondrial patients and their families in Finland. IMP is pleased to announce that they have become a full member of the international network. Our voice is becoming stronger! The official name of the organisation is in Finnish and the language is a bit of a puzzle for most of us, but you can find them here: Lihastautiliitto, Finland

From the 2nd to the 4th of October 2013 a new conference on mitochondrial disease will be organised in the UK. This conference will bring together world leaders in the field of translational mitochondrial medicine. The interactive programme is designed to engage and inspire a new generation of mitochondrial researchers, who will harness new technology to prevent and treat these devastating diseases. Scientific speakers from all over the world will lead the discussions on diagnosing, treating and preventing mitochondrial disease.

For more information:

Wellcome Trust: Mitochondrial Disease - Translating biology into new treatments 

 

Canadian Cristy Balcells wrote a must-have book for mito families. It's been called a compassionate and rich handbook, an invaluable tool, and a long overdue body of work. Cristy Balcells' book, "Living Well with mitochondrial disease: A Handbook for Patients, Parents, and Families," is a must-have resource for everyone on the mitochondrial disease journey. Cristy, a nurse, mother of a child with mito, and family advocate and leader of MitoAction, www.mitoaction.org, brings all those roles into play in writing this book. Balcells' unique perspective as both a mito parent and a medical practitioner results in advice that is personal and practical, compassionate and comprehensive, accessible and expert.

Recently IMP has been informed about a study which has been carried out at the University of Helsinki, Finland, into diagnostic methods for mitochondrial disease. Up to now the only reliable diagnostic method exists of a muscle biopsy, which is a rather interfering and radical method for the patient. In search of other diagnostic measures with biomarkers, the finnish researchers carried out a study into the value of FGF-21 (a protein) for diagnostic use. One of the findings is that FGF-21 might be feasible as a first-line diagnostic test for mitochondrial disorders to reduce the need for muscle biopsy.

The Spanish Minister of Health, Social Services and Equality, Ana Mato, declared 2013 the Spanish Year for Rare Diseases at the Fifth National Rare Disease Congress organised by the Spanish Rare Diseases Alliance (FEDER) and D' Genes Association, at the end of October in Totana, Murcia in Spain.

The objective of this initiative is to raise awareness of rare diseases and to make them more visible to society, as well as to stir the interest of new researchers, health professionals and the industry in order to continue developing treatments and advancing the knowledge of these diseases.

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