The recent coronavirus pandemic has changed the way we interact, but for patients with familial dysautonomia, this may be opening new doors to an international connection.
The medical world has seen the cancellation of many conferences around the globe. With face-to-face meetings postponed and travel for people with underlying illnesses halted, new opportunities are presenting for events.
Familial Dysautonomia Day is an annual event that brings doctors and scientists with patients and family members, so they can learn about need to know advances in medical treatment and future research plans. It’s a day when families hear how changes in care come from observations in the clinic that are translated to the home. For many families, it’s an opportunity to hear about new potential therapies and what they can do to help speed up the work.
Each year, FD Day takes place at New York University’s Medical Center, where around a hundred family members make the trip into the Manhattan campus. This year, the conference will turn virtual, so that families can participate remotely.
The technology is here, explained Dr. Norcliffe-Kaufmann, we shifted to video-calls so we can stay in touch with patients, through virtual FD Day we actually have the opportunity to reach a greater number of patients while they remain in the safety of their own homes. A key planner in the annual event, hosed with NYU’s Dysautonomia Center and the Familial Dysautonomia Foundation, Dr. Norcliffe-Kaufmann explained, there is a lot going on (read here). We don’t want to delay and wait one year, to show families how they can get involved. FD patients need advances in treatment today.
FD patients used to have limited options as to where they could go for care. Now patients have a choice. We’ve been working for a while in making our global FD network, our approach to developing new treatments is shifting rapidly, with virtual FD Day 2020 we can still keep families in the loop. In addition to coming to New York, doctors at the Center are collaborating with teams in Jerusalem, Tel Aviv, London, and Mexico City. There are talented clinicians that have trained with us or have connections to our staff who see patients with FD at their local hospitals. We communicate, we share ideas on patients, those international networks were built with the plan of a global approach to developing new treatments.
It’s important for families to know that there are resources, and this year’s FD Day should focus on where families can find those resources. – Dr. Lucy Norcliffe-Kaufmann
I think it’s important for families to know what the Familial Dysautonomia Foundation and the Center have built. The plan is to have two sessions: one for clinical care and one for research progress. The most exciting developments this year has been the Foundation’s overhaul of its scientific advisory board. Now led by top neurobiologist Dr. Frances Lefcort and drug development expert Dr. Adrian Gilbert, one representing the U.S. and one Israel, but both with a personal connection to FD, the renewed energy is moving things forward. Before, when we spoke about FD, few people would know what we were taking about, now we have experts in basic science, clinical trial design, genetics, and gene therapy all engaging ideas. That for me has been a huge change, explained Dr. Norcliffe-Kaufmann. I can reach out to all these amazing scientists from diverse disciplines as a resource. Thanks to the natural history study, we are able to support their work by sending samples and providing data that tracks the clinical features of the cells. It adds a new dimension to the work to help translate it back to the clinic.
Of course, our staff at the Center will miss taking the patients out for karaoke after the conference. But right now, our priority is keeping the research progress happening, while the keeping patients safe in their own homes. We are planning a shorter virtual FD Day, starting at a time that makes it possible for people in Israel, Europe, and America to participate.
It’s the first time FD Day will be live streamed, but it’s also the first time the clinical research community will be able wake up and to reach FD patients all over the world at the same time. That’s exciting.
It’s important to get families involved. We need to make sure that geographic boundaries are no longer a constraint for progress in rare diseases like FD. Virtual FD Day 2020 is a time to sign up, get involved and be part of a global movement to find a cure.
Click here to register for the meeting: here
For more tips on staying safe during the coronavirus outbreak, see our advice for patients: here
Learn about key advances in FD: here