Following the advice of our nation’s public health experts and recognizing the rapidly evolving situation that we all find ourselves in both at work and at home, we have decided to postpone Firefly Fund’s second annual Niemann Pick Type C Newborn Screening Clinical Roundtable in the Washington, DC/Maryland area until November of this year.
These are such uncertain times.
• Many of our institutions have instituted travel bans;
• Meetings of a certain size – in some places any gathering of 50 people or more – are being cancelled; and
• We are all being encouraged to practice social distancing.
And while the situation may change in the weeks and months ahead, we are proposing this switch now because we cannot predict what the situation will be at the end of May. As leaders who work every day to promote health, we certainly don’t want to do anything that might put anyone’s health at risk.
While the date is changing, the focus of the meeting remains the same. We are convening the Roundtable to advance the scientific knowledge and clinical consensus regarding the initiation of treatment for any patient identified as having NPC following newborn screening. The Roundtable will dive further into the science supporting early, pre-symptomatic diagnosis and intervention following early onset of known NPC symptoms. We will review the latest information regarding the clinical trial landscape, share a possible model for identifying when to intervene, and get input on research being planned to compare health outcomes of siblings with NPC where the timing of diagnosis, disease progression and point of intervention differed.