Blog

On September 17th, the Board of the Histiocyte Society gathered in Karolinska Institute in Stockholm, Sweden to kick off the 38th Annual Meeting of the Histiocyte Society, which continued on for the next three days. Being in my mid-thirties, it is inspiring and humbling that for my entire life, there has been an international effort toward advancing knowledge about histiocytic disorders and improving outcomes for patients through the planning, development, sponsorship and oversight of clinical research.

I realized the impact of this firsthand when I received my LCH diagnosis and a member of the Histiocyte Society engaged my medical team to share the latest information on LCH along with the most current treatment protocol. The Histiocyte Society meeting is also a time to reflect on the progress that has been made over the years, as many of the clinicians and researchers who attend the meeting have done so for a number of years and have seen the research focus evolve as we acquire more knowledge.

Back Together Again

The 38th Annual Meeting was a momentous occasion. It was the first time in 3 years that this international group of clinicians and researchers came together in person (and virtually!) to share advancements, key learnings, and knowledge across all histiocytic disorders. The last two meetings were held virtually due to the pandemic; this year was the first time a hybrid option was offered by the Histiocyte Society. 247 clinicians and researchers joined from over 20 countries – with a majority of the participants attending in person!

During this meeting, family groups from around the world came together in person and virtually to engage in a discussion with the Histiocyte Society Board and with one another, on how we could move forward collaboratively for patients, with the same the mission in mind. Through the meetings and discussions, we created many commitments to more serious partnerships. Everyone involved understands the long lasting and important impact the direct connections and collaborations between family groups and medical professionals provide for patients and families.

The patient voice is so important to research, and research is equally as important to patients; a more united and collaborative international effort can only improve our progress.

The Histiocyte Society and Association partnership

For more than 35 years, the Histiocytosis Association, which is a separate nonprofit organization, has served as a partner, secretariat and the primary source of funding for the Histiocyte Society. The Association’s support of the Society includes:

• Organizing and managing the Society’s annual scientific and Executive Board meetings,
• Managing the overall organizational, administrative and financial operations,
• Aiding in the development of organizational guidelines and operating procedures,
• Building, developing and maintaining the organization and annual meeting websites,
• Facilitating communication between Society members and the Executive Board.
• Building and managing the Society’s membership database.

Conducting these activities alleviates the Society’s leadership of the administrative duties associated with running a volunteer-based, nonprofit organization and allows them to focus solely on research and treatment.

The Histiocytosis Association values partnerships with the Histiocyte Society, and the family groups from around the world who are working passionately for patients and families, and to cure histiocytosis. We were honored to facilitate this collaborative meeting!

A Bridge Forward

The outcomes of the meeting between the family groups and the Histiocyte Society Board, include a commitment to conduct a similar meeting each year at the Annual Meeting of the Histiocyte Society along with a midyear check-in. These check-ins will allow family groups to share key information related to patient programs or needs, and learn about research priorities and advancements from the Histiocyte Society. This will also help foster collaborative efforts and opportunities to work on shared projects.

The first of many projects will be developing a list of conferences around the world for specialty medicine, such as endocrinology and dermatology, where histiocytosis symptoms may first present. Attending these conferences would increase awareness of histiocytic disorders across the medical community and in turn could help improve time to diagnosis.

Keep your eyes open over the coming weeks for more information about the Histiocyte Society meeting including the distribution of the research projects presented, and a sit-down conversation with the new President of the Histiocyte Society, Dr. Kim Nichols and other members of the Histiocyte Society.