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See what we have planned for Rare Disease Day in our latest update.

Since 2008, the last day in February has been designated as Rare Disease Day (because in leap years, that is the rarest day). Throughout the world, several events are held on this day to increase awareness of rare diseases. We will be marking the occasion with a special offer for researchers and clinicians working in the area of rare disease research.

On February 28, and only on that day, rare disease researchers will be able to visit a special website where they can claim a waiver code to publish a paper with us. We’re currently still building that page, and will send out a link to our contacts working in rare disease research within the next few weeks.

This is where we could use your help: If you think that you would be able to pass on that email to researchers and clinicians working on rare diseases in your department or institute, please get in touch before the end of this month, so we can send you the information when we have it. Additionally, if you know someone else we should be contacting, please let us know as well. You can email us with your suggestions. (Of course we’ll also blog about it when the time comes.)

 

Publishing issues for rare disease researchers:

We decided to target this group of researchers because many of the issues surrounding the publication of rare disease research are related to problems we are trying to solve. For example, patient families have spoken out about the need for data sharing in the rare disease community, and the 2010 IOM report on rare disease research mentions that some rare disease groups, such as the Myelin Repair Foundation, may insist their research partners share their data. F1000Research includes all underlying data with papers and complies with regulations for data sharing.

The IOM report also addresses the issue that patient studies can be difficult to publish because the low number of patients means that sample sizes are often small. We’ve spoken with a few rare disease researchers over the past weeks and learned that there is an increasing demand for venues where they can publish smaller units of research – perhaps just covering a single experiment or a small study. That’s something we can also help with: F1000Research accepts short research articles, case reports, and data papers – and with the waiver codes we plan to give to rare disease researchers, they’ll be entirely free to publish! (Normally short articles cost up to $500, and longer papers up to $1000. See our rates here.)

Again, if you think you can help us reach out to researchers working in drug development, genetic analysis, or patient care related to rare diseases, please get in touch before the end of January, and we will make sure they get a chance to publish some of their work at no cost.