The FD Day virtual conference, run by the New York Centre for Familial Dysautonomia was attended by several FD families in the UK as well as consultant neurologist Dr Hagen, who treats FD adults. Our committee member Rosalind Jacobs writes that she was delighted at being able to attend the event for the first time, as it was live online due to the pandemic. She explains that there were over 90 families with a global line up of specialists talking about the disease and treatments.
Ros says it was
Unbelievable to hear the latest research in FD and to hear from theRosalind Jacobs
specialist in Israel and New York. “
She found their accomplishments so inspiring and was impressed with their knowledge sharing, professionalism and their passion for worldwide collaboration. It was reassuring and informative that they discussed FD patients who had had Covid 19, all whom had recovered. Ros felt the ability to ask questions and articulate problems so they could learn to treat aspects of FD was valued, and encourages all suffers to read their blog and complete any questionnaires and take up opportunities to be involved in their research. She explains that the more information about common ailments they have, for example, enabled them to design a treatment, to prevent eye deterioration.
The online event and research opportunities are all available to view on their website and blog: www.dysautonomiacenter.com. They are also posting advice on how to reduce risk of the coronavirus infection and how to monitor health at home, and how to slowly restart life while protecting FD patients in the household.