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Global Growth in Histiocytosis Patient Advocacy and Research

Me and a few members of our staff returned from the 39th Annual Histiocyte Society Meeting in Athens, Greece a few weeks ago and now that we’ve unpacked our suitcases and the meeting, we’re ready to share our takeaways with you.

Later this month, we will talk with Kathy Wisniewski, the Secretariat between us and the Histiocyte Society, who orchestrates the annual meetings and Kim Nichols, the current president of the Histiocyte Society about their thoughts on this year’s meeting.

But this week, we wanted to summarize the International Patient Advocacy group meetings from the eyes of some of its key members.

Firstly, our close collaborator Fernando Gotz, from the OR Association in Spain, shares his experience from the perspective of someone highly involved in Spanish and Latin American histio groups all year-round.

Fernando Gotz, OR Association

Fernando Gotz Cart, President of the OR Associaton in Spain

The OR Association from Spain, representing Spanish and Latin American patients, has participated in the 39th Histiocyte Society meeting in Greece (October 2023) for the second year in a row. From our perspective, the meeting was very successful. We prepared for this meeting throughout the past year, working closely with the Histiocytosis Association, the Erdheim Chester Global Alliance, and the Histiocytosis Association in Canada to come well-prepared and make the most of this Congress.

Our goal as a patient association is to establish a closer working relationship with the Histiocyte Society’s board. During the congress, we had the opportunity to continue discussions with the HS board and with our colleagues, the patient´s associations, including those from Greece, Italy, US, France, the UK, Serbia, and Japan. We addressed some critical issues that impact patients worldwide, such as communication challenges, language barriers, the need for standardized information on patient association websites, and supporting access to treatments in different regions, particularly in low-income countries. We also discussed and agreed on a possible collaborative study to be led by the association group, focusing on the burdens patients face and their specific needs.

During the congress, OR Association presented a scientific poster containing information about our collaboration with a group of Histiocytosis experts named GELA-H (Latin American study group for Histiocytosis). While our association leads this group, its participants are physicians who share complex clinical cases, studies, and allocate resources, fostering a stronger connection within the Spanish-speaking Histio community.

As patient representatives, we are grateful to participate in Histio congresses and conferences. Listening to and participating in scientific discussions is highly meaningful to us. Being part of the progress and advancements made by the medical community with our support is crucial. We firmly believe that the Histiocyte Society’s annual meeting is a platform where physicians from around the world can study Histiocytosis. We appreciate the opportunity to collaborate and participate in such conferences. Thanks to the amazing hosts of this congress, Dora, Marianna and Paul from Hellas Association who took such good care of us and made these days so special. We are a big Histio family #globalhistio. 

Let’s continue working together to improve the quality of life for Histio warriors and their families.

Claudio DiGirolamo, President of the Histiocytosis Association of Canada

Claudio DiGirolamo, Histiocytosis Association of Canada

On behalf of the Histiocytosis Association of Canada (HAC) and the 10 specialists who joined us in Athens, we were thrilled to be part of such a collaborative event involving direct care providers and international advocacy groups. The advances revealed and the testimonials delivered by the advocates clearly demonstrated a tremendous commitment on the part of the entire care continuum that as a group we will continue to improve the outcomes of our Histio community locally and globally.

Finally, we talked with Marianna from Artemis Society for Histiocytosis (a histio Greek organization) who didn’t have as much time to participate with the international groups, as she was helping to run the meeting as one of its hosts in Athens!

Marianna Efthimiou of the Artemis Society for Histiocytosis

Marianna Efthimiou, Histio Hellas (Artemis Society for Histiocytosis)

Histiocytosis Hellas was honoured to host the 39th Histiocyte Society Meeting this year in Athens! We are grateful that we were able to meet so many extraordinary people and to see dear old friends again! The meeting’s sessions were all really informative and productive. We believe that the family associations are on the road to achieve great results with everyone’s collaboration! We are eagerly anticipating the 40th Histiocyte Society Meeting in India!

‘’Together we will find a cure!’’

I couldn’t have said it better myself.

Thank you to everyone who contributed to this post with their experiences from the International Advocacy Groups. We are truly stronger together.