International Histio Advocacy Coalition Meeting

Stockholm, Sweden

September 2022

Patient advocacy groups from around the world, including the ECD Global Alliance, gathered in September 2022 as part of the Histiocytosis Society (HS) annual meeting.  The HS is an international group of more than 200 physicians and scientists committed to improving the lives of patients with histiocytic disorders by conducting clinical and laboratory research into the causes and treatment of this disease.

Each year HS hosts a meeting to bring together physicians and investigators to discuss clinical and scientific advances related to histiocytosis.  This year, patient advocacy groups were invited to join the meeting.  Time was built into the agenda for discussions between the HS Board members and patient advocacy groups, as well as meetings between the various patient organizations.

Advocacy groups from the US, Spain, France, and Italy, were in attendance and other groups participated virtually from around the world.

The advocacy group meetings were productive, with agreements made to work together in the future.  The HS Board assigned the Scientific Committee Chair and Education Committee Chair to act as liaisons between the HS and family groups and there will be meetings held twice a year to facilitate continued conversations between the HS and the advocacy groups.

In addition, the advocacy groups agreed to work more collaboratively in the future and continue to share ideas.   It is believed that by first talking and sharing information among the groups, each group will find it easier to meet their missions.  These groups made a commitment to meet virtually every other month, with an in-person meeting to be held yearly as part of the HS annual meeting.  In the future, the groups will work together on projects designed to help patients and their families.

Issues facing patients with histiocytosis diseases were discussed, with an understanding that by working together globally, we are all in a better position to make things better for everyone.  Some of the topics discussed that need focused effort included:

• Treatment access for patients in resource limited countries
• Working together with all stakeholders to solve problems
• Raising awareness within the medical community to allow earlier diagnoses to be possible
• Inclusion of the patient voice in research planning
• Creation of an international day for histiocytosis
• Development of simple diagnostic criteria
• Continued communication between the research and patient communities

“Building bridges and an environment of inclusiveness have always been at the core of the ECD Global Alliance’s approach to improving the care and support available to ECD patients everywhere,” said Kathy Brewer, President of ECDGA.  “Being part of this global initiative was exciting to see.  We believe this effort will bring about good things for ECD patients and their families, as well as all who live with histio diseases.”