Behind the Scenes of the Histiocytosis Association in 2023
I cannot believe we are already in 2023! Why does it feel like the years fly by the more we experience? In November, we held our HopeCast, where I shared some thoughts on what this new year would look like for us at the Histiocytosis Association, however I wanted to sit down to share more details and thoughts with you.
Before I jump into 2023, I’d like to quickly reflect on the past year (and the last few years of my time with the Histiocytosis Association).
I was diagnosed with LCH 30 years ago but can still remember the feelings our family experienced. The range of emotions that we journeyed across from frustration to sadness to fear. There was little hope, and we knew there was little information about histiocytic disorders and little knowledge of effective treatment. It was terrifying and uncertainty sunk in. I had the fortune of connecting with the Histiocytosis Association early on in my journey and remained connected throughout my life. In addition, my family tried to keep up on the latest information about new therapies, new knowledge, and new research studies.
Over the years, I have seen some tremendous strides forward, led by investigators around the world who dedicated their careers to focusing on histiocytic disorders. This has led to the discovery of the role of genetic mutations across histiocytosis, which has in turn helped with the development of targeted therapies that are more effective and less harsh than the traditional chemotherapy and radiation treatments. In 2022, cobimetinib received FDA approval for treatment of LCH, RDD, ECD.
There are therapies that help HLH patients progress to bone marrow transplantation which can be curative. There is now a consortium for histiocytosis in North America and Europe (NACHO and ECHO), who conduct clinical trials for histiocytosis. The North American Consortia for Histiocytosis has over 65 trial sites in the US and Canada. That means patients do not have to travel as far to participate in a study and receive potentially lifesaving therapy.
The Growth and Goals of The Association
These advancements bring us closer to opportunities for earlier diagnosis and possibly newborn screening utilizing the known genetic mutations. Advocacy for support for histiocytosis in any area, including newborn screening, is always a priority and something we focus on every year. Sometimes, it can feel as though our efforts barely make a dent. However, upon reflection, it is easy to see how these efforts, regardless of how big or small, get us step by step closer to our vision of a world free of histiocytic disorders.
This year, 2023, is all about strengthening our current programs and growing the services we offer to be more accessible and have a stronger impact for the histio community.
- Over the last two years, we updated our website extensively to be more user friendly, to put important information and resources more easily in the fingertips of those who need them.
- In 2022, all the medical and scientific information on our website was sent to histiocytosis clinicians who are experienced in diagnostics, treatments, and the latest information on one or more histiocytic disorders. They reviewed and are updating this information as well as seeking input from the histio community on the content. This takes time and involvement from many stakeholders including patients/families and is rounding a corner toward completion.
- Our resource directory has robust information, links to many incredible programs and services, However, it is a bit challenging to navigate. We plan to bring this information to you in a new format while maintaining the searchable directory as well.
- We are working on updating our brochures with the new medical and scientific information; we hope to have those available in print and digital format for patients, families, and medical professionals soon.
- In addition, we will be able to provide new brochures to institutions, newly diagnosed families, and to use to raise awareness at medical conferences and other events.
- In June 2022, we launched peer chats and support groups for the histiocytosis community and in December 2022, asked for feedback on those sessions. We have loved offering these and will continue to evolve the sessions to ensure they provide the support and connection we all want and need. We encourage any new ideas for groups, topics, or ways to connect!
- We thoroughly enjoyed the Memphis Patient & Family Conference, as we truly love connecting with you and being able to provide valuable information on histiocytosis and other related topics. We hope to be able to host at least one similar event this year and possibly some smaller regional meetings. If you have a local institution that would be willing to host, please let us know!
- We are focused on growing our partnerships with histiocytosis specialists and clinical trial/study opportunities. One of those ways will be through collaboration with the Histiocyte Society, North American Consortium for Histiocytosis, European Consortium for Histiocytosis, and industry partners. Once research projects are funded, participation in them by the community is a critical aspect to helping investigators learn and can aid in improving treatments and patient outcomes in the future as well as aid in new program development as we learn more about unmet needs of the community at every stage of their journey
- We are thrilled to offer our Histio Scholarship Program for Warriors and Family Members once again. A new opportunity for this year will be a scholarship for Junior Investigators to attend the Histiocyte Society’s Annual Meeting. The goal is to help support researchers who are new to the histiocytosis field who may not otherwise be able to attend to present their abstract. This will be separate from the Histiocyte Society’s current travel scholarship award.
- We have seen so much beautiful collaboration in 2022 and are excited to continue to increase our collaboration with other patient-advocacy groups. This brings the histio community even closer together.
- We will continue to seek out valuable partners that can aid our community through the financial, emotional, social, and diagnostic aspects of managing histio.
And, as always, we want to hear from YOU, to learn more about what you feel we should focus on more or what areas of our programs and services you utilize the most, least, and why. We are here FOR YOU, and it is important to us to know that we are serving the histio community as best as we can.