Leber hereditary optic neuropathy (LHON) Community

Meet, discuss & support other patients or families living with Leber hereditary optic neuropathy (LHON). Contribute to topics, or just share what's on your mind

Hey, let's get this RareConnect thing going!

I have just returned from a week in Barcelona where I was helping to deliver the second EUPATI course, having been a student on the same course myself almost exactly a year ago. EUPATI is the European Patients Academy which is part of an EU project to train patient advocates across Europe to improve the quality of research and regulation in healthcare.

I must write more about this but this is not really the forum for detailed discussion on EUPATI, fascinating though it might be. The course did, however, give me an opportunity to drop in to the RareConnect offices and talk through with Rob Pleticha a little about the concept and philosophy of RareConnect.

LHON is a fully international disease - it is found throughout the world and in every ethnicity. Research into its causes, triggers, treatments and cures takes place in the UK, France, Italy, the US and many other countries besides. Much of this work is published in English but much of it does not get widely reported at all. Patients who are not confident in the English language inevitably find it hard to find information in their own language and while most studies are translated into English if they originate in another language, it is not always the case and there may still be a delay.

If only we had a platform where we could all help each other to share information as widely as possible on a worldwide scale and in multiple languages with easy and accurate translation tools. A place where the information we share belongs to us the patients, instead of a faceless (facebook) corporation that has the ability to delete our information whenever they wish.

Well, hey, guess what - if you are reading this post then that means you have found that place. But in order for it to work properly we will have to start using it and bringing our members, friends and family etc into the RareConnect community. I am not pointing fingers, I am more guilty than most as I have a huge amount of knowledge about new developments in research etc that I should be sharing here.

Over the next weeks and months I hope to do just that. But let me not be the only one - let's all have a push to bring people into RareConnect as members and to start sharing with each other. You never know, it may even be fun!

Russel- this is a very enthusiastic message. I am happy to become a member of RareConnect community and looking forward to its continuous development. Indeed, this is a new platform, yet very important for all- patients, policy makers and industry representatives.

I have recently become an entrepreneur in the biotechnology startup and lead the development of therapies for rare, genetic disorders. My interests focus on finding cures for patients who are affected by the diseases that lead to visual impaired and blindness (LCA, LHON).

Since January I have been successfully building and strengthening collaboration between global stakeholders from NIH, FDA, EMA, National Organization for Rare Disorders (NORD), Fighting Blindness Foundations from the EU, Canada and USA, industry and research institutions. The main purpose is to accelerate development of therapeutics that will benefit patients.

I am involved in raising public awareness and education on the use of cutting-edge technologies to develop treatments for those devastating diseases. Let’s continue the conversation and reach out to those who need it most. I am excited to be a part of this fun process!

Thanks for the encouragement and welcome to this fledgling community. I saw that you had registered for our first UK patient day the other week but were unfortunately unable to attend. It would be nice to catch up in person some time but meantime I hope we can get some really valuable conversations going in this forum. It will take a little effort before we really have "Lift-off" but once that happens I think the potential is enormous.

paulamorandi
moderator

Hi everyone, I must admit that I don't quite understand how rare connect works and this might be the general problem as to why so many people aren't using it yet. I wondered if there might be a Rare Connect APP like FB which may be used on a smart phone? this might enforce the use of this really great platform. Thank you!