Blog
2025 and Beyond: Our Hope for the Next Chapter
As we at the Association bear through this cold January and get our footing in this new year, we’re looking back on 2024 and using our successes and opportunities for growth to define where we are heading next.
If you’d like to hear about our 2024, you can check out the HopeCast video on our YouTube, or each pillar on its own in podcast form.
Making Histio Research More Digestible

Our first goal for this year is continuing something that has been a great resource for patients and families looking for progress in research. Our Histiocytosis Research Publication Interviews series. In these videos, one of a number of our staff members sits down with a physician, or a few, to break down a recent histio research article they are an investigator on.
These offer a great opportunity for the community to get a thorough look at these studies, with questions that help them understand the complicated process behind each one. It also helps to bring greater awareness of these studies to other clinicians and scientists, to enhance the footprint and opportunity to learn about key information.
We already have a new interview recorded for 2025 that we will have up early next week, and a few more scheduled for the next month.
Growing Our Programs
Throughout this year we will be working to build better programs for this year, and years beyond.
Firstly, we are looking to maintain the number of regional meetings this year, as we have continued to hold multiple across the United States. We know these meetings were sorely missed during the pandemic years and now that we have started in person meetings again each year since 2022, we want to bring them to every region of the US. With help from sponsorship, especially by Sobi, we intend to do just that.
On the virtual side, we want to bring more avenues of education and support. We are looking to do several new webinars, with an all-new platform! As of last fall, we now have access to KUDO, a multi-language platform with AI and human translators, with translations for over 200 languages. [We can host up to 10 languages in one meeting!] In less than a month, we will be hosting a webinar with Dr. Gaurav Goyal on the subject of Rosai-Dorfman Disease (RDD) and how it’s gone from a more mysterious rare disease, to understood in the field of hematology and oncology. This webinar will feature a presentation, followed by a Q&A, and we encourage all, no matter what language you speak, to come and ask Dr. Goyal about RDD. You can also view our recent webinar on Pulmonary Langerhans cell histiocytosis (LCH), here for English or here for its original Spanish.
A big push for this year is establishing more time slots for peer-to-peer meetings and grief support groups. Last year, we started working with Renee Christensen Ph.D., CEAP, HHP, PCC. She has helped us expand the grief group immensely and is already working with us to build on that further. We will be partnering with other experts in the field of social work and health & wellness to enhance this program further.
We also are working with the OR Asociación and Asociacion Argentina de Histocitosis to bring more frequent Spanish Language Support calls, reaching from here in the US to Latin America and Europe.
Finally, we are looking to expand our scholarship programs this year, in time for the 2026 application window. The Histio Student Scholarship opens on February 21st this year, with the usual 4 scholarships awarded, but we hope by 2026 to have even more opportunities. We will be working with event hosts and current pharmaceutical sponsors to establish sponsored scholarships, in the same way the Histio Hike Shenandoah does now.
We will also be working with the Histiocyte Society, to establish more scholarships for young investigators for the Joseph Ingrassia Early Career Scholarship.
Reaching New Places in the Medical Community
Beyond education for the patient and family community, we also aim to reach more of the medical community this year.
A large part of this is our staff and ambassadors attending more medical conferences in relevant specialties such as endocrinology and possibly returning to the national dermatology conference. Both to share histio with medical professionals unfamiliar with it and discuss more variations on the disease prognosis and treatment with those who have dealt with it in a capacity outside of hematology and oncology. We also plan to attend the American Society for Hematology (ASH) and American Society for Pediatric Hematology & Oncology (ASPHO) conferences, where we will hold booths for education and awareness.
This year, we are creating and printing new physician brochures, working with the Histiocyte Society. In addition, we are aiming to create brochures specifically explaining both of our organizations. This will open the opportunity for more patients to share histiocytosis with their doctors, practices, and hospitals with more advanced languages than our current patient and family brochures.
We want to reach medical professionals in the beginning of their education and in progress of their careers. This starts with increased involvement in early medical education through partnership opportunities such as Global Gene’s Rare Compassion Program and NORD’s Students in Rare program. We have had ambassadors participate in past years of the Rare Compassion program and are in discussion for partnership with the Students in Rare program this year.
Then, to reach a broader section of doctors with histio education we are creating more Continuing Medical Education webinars for physicians. Coordination for these is already underway, and we can hopefully share more about this soon.
Partnering with the National Comprehensive Cancer Network
The National Comprehensive Cancer Network, or NCCN, is an alliance of 33 leading cancer centers across the US. Their mission is “to advance quality, effective, equitable, and accessible cancer care and prevention so all people can live better lives.”
In early January, I attended an in-person panel meeting where I sit as patient advocate to help ensure the patient perspective is taken into consideration as clinical guidelines are updated and created. An interesting fact that we discussed is that for all cancers represented in the NCCN Guidelines, there were 15.1 million downloads in 2023. About half of these downloads are from outside the US.
The impact of the NCCN Guidelines is truly international although they are written for the US Population. For Histiocytic Neoplasms specifically, there were over 22,900 downloads in 2023 and 26,192 in 2024! This shows how widely accessed they are – if you haven’t yet viewed the guidelines, you can access them as a patient or share with your provider by creating a free account.
Our hope is to expand those numbers by continuing to educate on the purpose and benefit of the NCCN Guidelines. In addition to sharing the current guidelines for LCH, RDD, and ECD, the panel is in the process of writing clinical guidelines for pediatric LCH and malignant histiocytosis (histiocytic sarcoma, indeterminate cell histiocytosis, etc.) that we hope will be published at the early half of this year!
Mapping out the rest of the decade
Finally, we will be meeting among our staff, board of trustees, and even tapping into the community, to establish a strategic plan from this year until 2030. We have made great strides with many of our overarching goals from 2020-2024 that were established soon after I came on as the Executive Director and refined over the past few years. We seek to do that once again for finishing off this decade strong as an organization and community.
Here’s to the Year Ahead
I am so grateful for all you have done as a community, whether you support us, volunteer, or are just benefiting from the resources we provide. Here is to a great year ahead!