Archive News 2014

The Australian Mitochondrial Disease Foundation has updated its fantastic booklet on mitochondrial disease, aiming at providing information for medical practitioners. Providing (practical) information with the purpose of improving the quality of life of those who suffer from mitochondrial disease is one of the goals of the AMDF. The latest version of "Mitochondrial Disease - Information Booklet for Medical Practitioners" can be downloaded here.

At present there is a wonderful opportunity for qualified individuals to become part of the thriving and committed UMDF organisation. The important position of Director of Development is vacant. The Director of Development leads the organization's special events, major gifts, leadership gifts, planned gifts, grant writing, annual giving, and stewardship programmes.

Those who are interested may apply before the 20th of October, 2014. For more information: click here

Thursday, 25 September 2014 00:00

IMP welcomes new member: The Lily Foundation, UK

On September the 25th The Lily Foundation from the United Kingdom has become the newest member of IMP. It is an asset to IMP that such an active and involved organisation as The Lily Foundation has joined the international network of IMP. With this new member IMP is becoming a stronger and even more powerful network of patient organisations involved in mitochondrial disease. For more information on The Lily Foundation

Lily Foundation

The Australian Mitochondrial Disease Foundation is delighted to award its first two Incubator Grants. One grant will facilitate Professor Justin St John's research into preventing the transmission of mutant mitochondrial DNA from mother to child. The second grant will fund Dr Matthew McKenzie's work in generating new mouse models of mitochondrial DNA disease that will provide tissue samples on which mitochondrial function can be studied. These inaugural grants form part of the pilot Incubator Grant programme.

Both these projects involve novel areas of research, which AMDF hopes will reveal invaluable information in the fight against mitochondrial disease.

More information: click here

During the weekend of 20th to 22nd April 2012 seventeen clinical and basic scientists and a patient representative met in Naarden, The Netherlands to discuss Complex I deficiency. Delegates work in six ENMC member countries (Finland, France, Germany, Italy, the Netherlands and the UK) and three non-member countries (Australia, Canada and Israel). The meeting was the first ENMC workshop dedicated to Complex I deficiency, the most common subgroup of mitochondrial diseases. For outcomes of the workshop and how this will benefit patients: www.enmc.org

From the 15th to the 19th of June, the large EUROMIT medical conference will take place, in Tampere in Finland. For the first time, the medical conference will be expanded with a special patient programme, for patients, their families, their carers and their representatives. All mitochondrial patients are welcome! The programme will be offered in English, with translations, if possible, into the major European languages. Interested? Go to the site and register now. www.euromit2014.org

Thursday, 13 March 2014 00:00

Leigh Community on RareConnect is growing!

Recent statistical analysis of visitors to the Leigh Community on RareConnect show that the forum where patients and families from all over the world can share their experiences, thoughts and feelings has been growing well in the past 3 months. The website is a result of close cooperation between Eurordis and the American organisation Nord. Both are representing patients of rare diseases in their part of the world. Interested? Want to visit? Go to: www.rareconnect.org/en/community/leigh-syndrome

Medicines should enter the market faster. With this intention the European Commission has proposed today to streamline and reduce the duration of national decisions on pricing and reimbursement of medicines. In the future, such decisions should be taken within 120 days for innovative medicines, as a rule, and for generic medicinal products within only 30, instead of 180 days today. Commission also proposes strong enforcement measures in case the decisions do not comply with the time limits, as these are often exceeded by Member States. The new Directive represents an important simplification measure and shall repeal and replace the longstanding Directive from 19891, which no longer reflected the increased complexity of the pricing and reimbursement procedures in the Member States. Presenting this proposal the European Commission Vice President Antonio Tajani, responsible for Industry and Entrepreneurship, underlined: "We need faster decisions leading to pricing and reimbursement to maintain a dynamic pharmaceutical market and to offer citizens better access to pharmaceuticals. Our proposal will lead to substantial savings for public health budgets, for example by allowing earlier market entry of generic products. It also creates a more predictable environment with greater transparency for pharmaceutical companies, thus improving their competitiveness." www.ec.europa.eu/enterprise/sectors/healthcare