An international histiocytosis virtual meeting was held this September during Histiocytosis Awareness Month of 2021. The webinar was organized and hosted by the OR Association of Spain, with the audience consisting of mostly physicians and a smaller number of patients. 

One session during the conference included the ECD Global Alliance (ECDGA) and Histiocytosis Association (HA) on September 24, 2021. Dr. Gaurav Goyal, University of Alabama Birmingham, led the educational meeting by presenting the topic Impact in adult patients with LCH and Erdheim-Chester, ongoing treatments, and studies.  The talk included descriptions of the adult histiocytic disorders and common clinical features and treatments that have been found effective. Diagnostic tips were shared to help physicians confirm an accurate diagnosis of these similar diseases. 

The collaboration with histiocytosis advocacy groups worldwide has brought about many benefits. This opportunity in particular was very beneficial to our Spanish-speaking community. Physicians in Argentina, Spain, and beyond, were able to glean information found and shared here in the US.  Attendees were very appreciative of the opportunity to learn and bring better care to their patients. 

The directors with HA and ECDGA shared their roles in supporting histiocytosis patients and the medical community.  The physician networks are interlocking and constantly growing across the organizations. With more awareness and education being offered by these organizations, efforts in histio care are being made daily.

The ECDGA specifically supports Spanish-speaking families with the addition of quarterly chat sessions, providing an opportunity for these families to connect virtually.  This emotional support can often help patients and family members feel less alone, in addition to being better able to advocate for themselves with their care teams.  Quarterly meetings with these patients are also held with a Spanish-speaking physician familiar with histiocytic diseases and their care.  Any patient or family member is welcome to join this chat!    

View this webinar recording on YouTube.

Go to our chat session schedule.