As we enter the coming year, I wish everyone in the Rare Disease Clinical Research Network my very best wishes and thank you for your continued support of my role as Steering Committee chair. It is a great pleasure to see this group of investigators across the globe and centered at the NIH making such wonderful progress over the now eight years of experiences for many.
We certainly need to remember all the participants in this enterprise, particularly the many individuals and families whom we serve, the patient advocacy groups who provide such a vital role, and the many interested groups who support us in these endeavors.
While we work diligently in our individual silos, we must be mindful that the DMCC is engaged with every study, a remarkable effort under the expert guidance of Jeff Krischer. Without doubt, we would not be where we are today if not for the leadership and longstanding support of Steve Groft and the members of his ORDR team. I am certain of this.
We have much work to do as a network. I look forward to the next year and once again will be asking each investigative team to be certain that they participate actively in the standing committee structure as currently set forth. In this manner, I am certain that we will be able to maintain and advance the active support of NIH specifically and the public more generally in the rare disorders that we represent.
Message from Alan Percy, MD
Newly re-elected Chair of the Rare Diseases Clinical Research Network