Our partner

New online resource on ALS

Rare diseases message board, open discussion, and online support group.

New online resource on ALS

Postby agnes » Tue Mar 09, 2010 12:35 pm

Hi - thought this below might raise some interest - it's a consortium of top experts that joined together to find treatments and cures for ALS, funded by the EU. They have launched an online resource for all those affected - whether patients, family members, physicians, nurses, experts, or the business community involved with financial backing medical projects. Would love to know thoughts.

Here is the press release on the announcement:
MitoTarget Launches New Online Resource for Physicians and Sufferers from Rare Illness ALS (also known as Lou Gehrig's disease)

European MitoTarget consortium leader, Trophos, hopes site will support patients and carers and speed up finding a cure for the disease, which has attacked many famous people including scientist Stephen Hawking

Marseille, France, March 8, 2010 - Trophos, the pharmaceutical company specialising in therapies for orphan diseases including ALS, announces today, on behalf of the MitoTarget consortium, the launch of MitoTarget Online, www.mitotarget.eu. <http://www.mitotarget.eu>
The multilingual web-based resource aims to be the first point of call for all of those affected by ALS. This includes sufferers and all physicians, care nurses and specialists, as well as members of the public with a friend or family member with the disease. The website contains detailed information on ALS and related subjects, and will host a comprehensive range of links enabling all those affected to find further information and support.
ALS (full name Amyotropic Lateral Sclerosis), or Lou Gehrig's Disease, is a fatal motor neuron disease currently with no cure. The life expectancy of ALS patients usually ranges from about three to five years after diagnosis. The disease causes degeneration throughout the brain and spinal cord. Famous sufferers include Stephen Hawking, who is thought to have an extremely rare variant of ALS that has enabled him to survive since his diagnosis at the age of 23, though it has also claimed the lives and careers of many talented sportspeople, musicians, artists and politicians. Only 90,000 people are estimated to have the disease worldwide. It most commonly affects people aged between 40 and 70. More people die annually of ALS than multiple sclerosis.
MitoTarget Online will also enable the ALS community to follow details of the major clinical trial being run by the MitoTarget Consortium. Currently, there are few drug trials in ALS.
Along with Trophos acting as co-ordinator, the MitoTarget consortium is backed by the European Union (EU) and consists of 17 partners from four European countries (France, Germany, United Kingdom, and Belgium). A centre in Spain is also participating in the project. Fourteen of the partners are participating in the clinical trial and five in research aimed at understanding the underlying mechanisms of ALS and other neurodegenerative diseases. These entities are among the leading ALS treatment and research centres in Western Europe, and are references for ALS diagnosis, treatment and care.

"Trophos and the MitoTarget Consortium wish to develop treatments as quickly as possible for ALS, a rare but terrible and fatal disease," said Damian Marron, CEO of the consortium leader, Trophos. "We want to make it as easy as possible for sufferers of the disease and for other people, including specialists, physicians, nurses, patients, and members of the public, to find out and share information. We hope this will speed up the process of finding cures, as well as help all those whose lives have been touched by this devastating disease."

Stephen Hawking, CH, CBE, FRS, FRSA, the British theoretical physicist, and a patron of the Motor Neurone Disease Association, said "It is essential that as much support as possible is given to those who are diagnosed with ALS. Their needs are to live as long as possible in as fulfilling a way as possible. It is encouraging that the MitoTarget consortium is providing practical online support for all those affected as well as developing treatments for ALS with EU backing."

About the MitoTarget Consortium www.mitotarget.eu <http://www.mitotarget.eu>
The MitoTarget consortium is an EU funded consortium dedicated to finding therapies for ALS. The consortium is led by Trophos, and contains the following partners:
The Mediterranean Institute of Neurobiology (INMED)
The Sheffield Care and Research Centre for Motor Neuron Disorders, part of the Academic Neurology Unit, University of Sheffield
The Department of Medical Genetics, Eberhard Karls Universität Tübingen, The Institute of Pharmacology from the Johann Wolfgang Goethe-University of Frankfurt (GUF)
The ALS Reference Centre, Assistance Publique - Hôpitaux de Paris La Pitié Salpêtrière
The Physical Medicine and Rehabilitation Department at the University Hospital Centre of Nice
Charité Medical School, the Centre for Neurological Medicine, part of the Hannover Medical School
The Institute of Psychiatry at King's College London
Katholieke Universiteit Leuven - the Division of Experimental Neurology
The Neurology Clinic of the University of Halle-Wittenberg
Centre Hospitalier Régional Universitaire de Lille - The reference centre for the Motor-Neurone Diseases of Lille
The Neurology Center at the University of Ulm
Centre Hospitalier Universitaire de Limoges - Department of Neurology of the University Hospital Dupuytren
Hospices Civils de Lyon - The Department of Neurology of the University Hospital Pierre Wertheimer
Consumer 0
Consumer 0
Posts: 1
Joined: Tue Mar 09, 2010 12:09 pm
Local time: Fri May 14, 2021 12:06 am
Blog: View Blog (0)


Re: New online resource on ALS

Postby Chucky » Tue Mar 09, 2010 10:12 pm

Thank you for posting abolut this. I was surprised to read that more die of ALS each year than MS, but when I think about it I can easily understand why this is true. The information and links you've provided seem sound and very informative. Do you know somebody with the condition?; have you encountered many dedicated websites for ALS?

psychforums.com rules:

Please send me a private message if you need help with anything.
Consumer 6
Consumer 6
Posts: 28158
Joined: Tue Jul 19, 2005 8:04 pm
Local time: Fri May 14, 2021 12:06 am
Blog: View Blog (0)

Return to Rare Diseases

Who is online

Users browsing this forum: No registered users and 1 guest