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ALS Patients Launch First-Ever Rare Disease Specific Investment Fund

Patients respond to ALS diagnosis by forming for-profit investment fund targeting a marketable cure for their disease

PR Newswire

AMSTERDAM, April 29, 2014 /PRNewswire/ --

On May 19th 2014, the founders of the fund will organise an ALS investors day, where they will reveal the blueprint of a revolutionary approach to find a marketable cure. The ALS investment fund will operate within an ecosystem that includes all necessary ingredients to bring a cure to patients, from a financial but also a meaningful perspective, in a multibillion-dollar market. The fund will allocate capital to create sound investment opportunities for investors and at the same time fill the ALS treatment pipeline with hope for those who need it most, the thousands who receive their "death sentence" every year.

ALS is a rare killer disease. Amyotrophic Lateral Sclerosis, or Motor Neuron Disease (MND) in Anglo-Saxon countries and commonly known in the USA as Lou Gehrig's disease, named after a famous New York Yankee baseball player, is a debilitating neurodegenerative disease which impacts thousands of people each year and for which no cure presently exists. This is precisely why three recently-diagnosed entrepreneurs teamed up to form an ALS-focused investment fund.

Currently, there are over 8,000 rare diseases. For most of these, mainly basic scientific research is carried out without considering possibilities to make a profit and almost all of these researches are accumulated in academic institutions. Successful translational research is limited due to a lack of knowledge to bring discoveries to the market and because the financial scope is not clear.

Co-Founder Bernard Muller and nominated EY entrepreneur of the year in the Netherlands:

"Our latest initiative - we already successfully launched the biggest global genetic research study ever, called project MinE - will enable us to show the potential impact of a truly meaningful investment that will bring hope to patients without ignoring the demand from investors for a return on their investment and it will also bring cost savings for health insurers as well as real translational research and shared scientific success." 

The fund hopes to raise €100 million and is specifically aimed at so-called impact investors and not at the traditional biotech/pharma venture capitalists. The event on May 19th will be hosted by sponsor Accenture at their offices in Amsterdam. Registration can be submitted via where also more information can be found.


SOURCE ALS investors day - Project MinE

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