On Concluding Well...
Rare Disease Review originally started as a simple website I created in my dorm room. Over the course of 36 hours, I conceptualized, built, and wrote what I believe to be the first serious knowledge translation tool for all rare diseases. Since then, we’ve published over 75 open access and comprehensive reviews and articles on rare diseases. We’ve also had over 100 volunteers support our operations as we became a registered nonprofit. I am immensely proud of the work we have done and the impact we have had on the rare disease community, which is why it is especially sad for me to announce that we intend to cease all operations by the end of April.
This was an incredibly difficult decision to make. But after four years of biweekly publishing, the executive team and I have had to consider the balance of this endeavour with other aspects of our lives. None of us have benefited financially from this project. This, along with the incredible amount of man-hours required to develop, write, and edit articles has forced us to evaluate how we can best contribute to our communities.
I still believe that the work we have done and are doing is invaluable. There is an immense frustration amongst patients of all types in their inability to find comprehensive medical content that is put in proper context. While this is often the responsibility of a health professional, within the scope of rare diseases it is extraordinarily difficult to act as such a guide, and I believe Rare Disease Review has set a precedent for being the seminal knowledge translation resource in this community. Our readership has spanned the globe, which speaks to the need for and value of the work we do.
I do not believe it is out of line for me to say that within the rare disease patient community, there is often a sentiment that suggests that doctors are dismissive and uncaring towards members of this community. I have no doubt that these beliefs stem from real life experiences, but nonetheless I posit that the negativity of such a sentiment is unconstructive to the goals of this community. I truly believe that perspective and understanding have tangible effects on people and on outcomes; the true value of Rare Disease Review has been its ability to provide these things, as opposed to providing treatments or cures.
I am confident that there will not be a hole in quality rare disease knowledge translation after Rare Disease Review’s departure from active operations. We have, for years, confidently shown that our knowledge translation model has remarkable demand and value. Many of our readers have reached out and thanked us for the work we’ve done. I, in turn, also have so many people I wish to thank.
Firstly, to past and present members of RDR’s team. I will be forever grateful to all of you for putting faith in the vision I set out so many years ago.
Secondly, to our readers. It is an immense privilege to be able to provide the content that we have to you, and to be able to hear your feedback and support.
Thirdly, to our sponsors. Thank you so much for taking a chance and supporting this project. We would not have been able to provide the level of service we did without you.
Founder and Chair of the Board of Directors
Rare Disease Review
Tell us your thoughts!