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Jun
27

ODDT gets some press

Well today it happened..

Open Drug Discovery Teams got some coverage by someone else besides us! I was interviewed recently by Genetic Engineering & Biotechnology News and today the article appeared. I have to admit its nice to see someone else write about the app. One suggestion from the article is that we connect with the National Organization for Rare Disorders (NORD) – Now I am fine with that and would love to help so please get in touch with us. Reading their website they are a giant of an organization for rare diseases and they charge for access to their database . I did notice the absence of any mobile apps though..so we just might be onto something..The article in GEN also mentioned that 5 rare disease groups when asked had never heard of ODDT. Here is why. Perhaps they do not know about mobile apps for science. Perhaps they had not thought that Twitter and social media could be useful for anything but chatting. Perhaps they were Android users. Seriously we had zero dollars to spend on marketing an app so everything we do is word of mouth and we make no apologies. There are 2 of us doing this in our spare time, no grants, zip. We have also been picky about what diseases to cover. Knowing there are thousands we had to start somewhere..so we have 2 extremes – big neglected diseases and really small rare diseases affecting a handful of patients. This brings to mind a set of scales. These two extremes are equal in our mind and yet there is a massive disparity in how we fund diseases and the attention they get from scientists and the press.

So chalk 1 up to ODDT. By creating an App that only a few people know about, we put Sanfilippo Syndome and Giant Axonal Neuropathy on the same page literally as TB, malaria, Huntingtons disease, Chagas Disease and leishmaniasis – and the aforementioned diseases got a mention in GEN. How often does that happen? There is a statement in there and it is that all diseases should be equal whether they inflict one person or 1 million. Some unfortunately are born with a rare disease that few can spell, others acquire diseases from parasites simply because they are born in a country where the disease has not been wiped out after literally billions of dollars have been thrown at it.

As a scientist which do you choose to work on – for most the decision is go with the funding – I predict the money will start to flow to rare diseases like never before. If ODDT can help make that happen and raise awareness it will have punched well above its weight. One little crazy idea for an app can change the way we do research and communicate about diseases MAYBE.

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