Join us for the 2025 Histiocytosis Patient & Family Summit!
Event Information
Join us September 26th and 27th for an empowering and informative experience at the 2025 Histio Patient and Family Summit. This event is dedicated to all individuals, caregivers, families, advocates, and healthcare partners impacted by histiocytic disorders. Our goal is to provide education, support, and hope to those living with histiocytic disorders. We invite you to connect, learn, and be inspired as we build memories in Seattle, Washington.
Space is limited, so we recommend registering early.
Click Here To Register!What to Expect
- Inspiring Speakers: Hear from leading histio experts, researchers, and individuals who have dedicated their careers or are personally affected by histiocytic disorders.
- Disease Education: Learn from histiocytosis specialists who are at the forefront of histiocytic disorders innovation and working to improve the lives of histio patients.
- Interactive Workshops: Gain valuable insights into living with a histiocytic disorder such as understanding pathology, genomic profiling, navigating clinical trials, and more.
- Community Networking: Connect with others who understand your journey and build a support system.
- Advocacy Opportunities: Learn how to be a strong advocate for yourself and the Histio community.
Venue/Accommodation Information
Hilton Motif in Downtown Seattle, Washington1415 5th Ave Seattle, Washington 98101
* A link to discounted room block rates will be provided upon registration. *
Youth Lounge
The Summit is family friendly, and we understand that kids and teens may need a break from the talks. That is why we created ‘The Youth Lounge’. The Youth Lounge will be a relaxed space for young attendees to take a break, enjoy some activities, and connect with others your age. See the FAQs for more information.
Special Events at the Summit
Seattle Mariners vs. Los Angeles Dodgers
Date: Saturday, September 27⏰ Gates Open: 5:10 PM | First Pitch: 6:40 PM
Take your Summit experience to the next level with an unforgettable night at T-Mobile Park, where the Seattle Mariners take on the LA Dodgers! Enjoy the game from block seating on the Terrace Club Level, complete with a shared bar and buffet for an elevated ballpark experience.
You can add this excursion to your registration when completing the registration form. Simply select the Seattle Mariners Game as an optional purchase during checkout. Spots are limited, so be sure to secure yours early! ⚾
Baseball Game Option #1
$180 per person (Transportation is included)
- Your ticket includes a food and beverage package, featuring a Build-Your-Own Burger & Hot Dog Bar, sides, dessert, bottomless peanuts & popcorn, and two drink vouchers redeemable for beer, wine, soda, or water. Plus, we’ll be featured with a complimentary scoreboard welcome during the game! Each ticket holder will receive a Histio Awareness t-shirt upon purchase.
Baseball Game Option #2
$80 per person (Transportation included)
- Each ticket holder will receive a Histio Awareness t-shirt when they purchase a ticket.
Baseball Game Option #3
$60 per person (no transportation)
- Each ticket holder will receive a Histio Awareness t-shirt when they purchase a ticket.
Combined Blue Ribbon Run Gathering/Experience
Histio Conference guests are invited to join Histiocyte Society Conference attendees for a relaxed walking reception. Network and connect with histio researchers and clinicians.
Click here to register for the in-person or virtual Blue Ribbon Run.
Program & Speakers
Preliminary Program
Friday, September 26th from 8am – 4pm PST
08:00 AM – 09:15 AM – Check-In & Registration09:15 AM – 10:00 AM – Opening Remarks & Welcome
10:15 AM – 12:15 PM – Session One/Breakout Rooms
12:15 PM – 01:30 PM – Networking Lunch
01:30 PM – 03:30 PM – Session Two/Breakout Rooms
03:30 PM – 04:00 PM – Day One Closing Remarks
*Networking Event Early Evening – Details TBD*
Saturday, September 27th from 10am – 4pm PST
08:00 AM – 09:15 AM – Check-In & Registration09:15 AM – 10:00 AM – Opening Remarks & Welcome
10:15 AM – 12:15 PM – Panel Session I
12:15 PM – 01:30 PM – Lunch/Peer Connection
01:30 PM – 03:30 PM – Panel Session II
03:30 PM – 04:00 PM – Closing Remarks
*5:00 PM – Late – Seattle Mariners vs. Los Angeles Dodgers*
Speaker Highlights
Sponsors
We would like to thank our Sponsors and Partners, whose generous support makes this Summit possible.
National Sponsor
Educational Partner
Regional Sponsors
Summit Partners
Patient Advocacy Partners
Interested in becoming a Sponsor? View the Summit Sponsorship opportunities here!
FAQ
What is included in Registration?Registration is required to ensure we have enough space, materials, and refreshments for everyone in attendance. Your registration includes breakfast and lunch on Friday and Saturday, helps to offset the cost of the speakers and meeting space, and powers the technology we need to run the meeting. Click here to register!
Your registration includes:- Event Sessions: Access to all general sessions and breakout sessions during the event.
- Meals: Enjoy breakfast, snacks, and lunch both days of the conference.
- Receptions: Attend the conference Welcome Reception and the Networking and Poster Hall Reception.
- Networking Opportunities: Ample opportunities to connect with thought leaders, sponsors, and other attendees throughout the event.
- Recorded Sessions: Access to recorded sessions in conference tracks
- Speaker Materials: Recorded presentations and PDFs of speaker slide decks available until December 31, 2025.
The topics that will be presented will range from specific overviews of each histiocytic disorder to sharing your histio story, emotional healing, and hearing directly from other patients, family members, and friends throughout the two-day event.
Some of the topics we’re excited to share include:
- From Silence to Strength – how histio patients and family members have found meaning and purpose from their journey
- Managing the Emotional Aspects of a Histio Diagnosis
- How does histio affect the rest of my body, including eyes, lungs, bones.
- Endocrine conditions and histiocytic disorders
- Survivorship
- What is pathology and how to unpack your pathology report
- Navigating a second opinion
And so much more!
Check this webpage periodically for agenda/program updates; as we get closer to the event, a full finalized program will be shared with everyone.
Are children welcome?Absolutely! This is a family-friendly event, and children are welcome to join. We will have a Youth Lounge available where children and teens can participate in activities if they need to leave the main meeting space, and volunteers will be there to help provide supervision. We understand that the content may be a lot for children and these meetings can be long, however we hope that this additional space will help make the Summit something the whole family can enjoy.
What is the Youth Lounge?The Youth Lounge is a relaxed space created for young attendees, including kids and teens impacted by histiocytic disorders. It’s not childcare – think of it as a cool spot where you can take a break, enjoy some activities, and connect with others your age. Whether they need a change of scenery during a session or want a more laid-back atmosphere, we’ve got it covered! There will be a mix of planned activities and things you can enjoy at your own pace throughout the event. It’s all about having fun, making new friends, and sharing experiences in a comfortable, supportive space. Come hang out and make memories that go beyond the event!
Is there a hotel block or special accommodation available?A link to discounted room block rates will be provided upon registration. You may also check other hotels, Airbnbs, VRBOs, etc. in the area.
What if my plans change and I am no longer able to attend the Summit?Substitution and Cancellation Policy
Any cancellations received in writing on or before 14 business days before the event start date will be refunded, less a $49 administrative charge. No refunds will be made after September 8, 2025. Your registration may be transferred to another individual up to 24 hours in advance of the Histiocytosis Summit. Should you need to cancel within 14 business days before the event start, the Histiocytosis Association can provide a receipt for donation to the Association in the full amount of your registration upon request.
In case of a conference cancellation beyond our control*, you will receive a refund for your conference registration fee only. The Histiocytosis Association reserves the right to alter this program without prior notice.
Please Note: Speakers and agenda are subject to change. In the event of a speaker cancellation, every effort to find a suitable replacement will be made.
* Events beyond our control include severe weather conditions, natural and man-made disasters, and any other similar events.
Will the Summit be virtual?Parts of it, yes. The baseball game, youth lounge and certain group sessions won’t be offered virtually. The Blue Ribbon Run, however, has Seattle-based and virtual participation options.
You can register at an early bird rate of $50 from 9/5 til 9/14
Virtual Registration will be $75 on 9/15 onward.
You can register for the Virtual Summit here.
Summit Travel & Pricing
Early Bird Pricing runs from 4/30-6/30, at which point prices will increase slightly.
Histio Community Member
(Patient, Family, Caregiver/Care Partner, Friend)
Adult Two-Day Ticket
Early Bird – $149 (until 6/30)Regular – $179 (7/1-9/25)
Youth Two-Day Ticket
Early Bird – $99 (until 6/30)Regular – $129 (7/1-9/25)
Children Ages 0-6
Children join free!
Healthcare Professional
(Medical Doctor, Investigator, Nurse, Social Worker, Child Life Specialist, etc.)
In an effort to expand awareness and understanding of histiocytic disorders among healthcare professionals involved in supporting, treating, or researching histiocytosis – we are offering discounted registration with the option to attend either one day or both days of the Summit. Sessions will offer a valuable opportunity to deepen your understanding of these rare conditions. Attendees will also have the opportunity to engage with expert speakers and gain knowledge to better support patients and families affected by histiocytosis.
Healthcare Professional – One-Day Ticket
Early Bird – $60 (until 6/30)Regular – $75 (7/1-9/25)
Healthcare Professional – Two-Day Ticket
Early Bird – $120 (until 6/30)Regular – $150 (7/1-9/25)
Histiocyte Society Active Member – FREE
Contact Kristen Nesensohn to obtain a special discount code.
Healthcare Professional RegistrationTravel Scholarship
We want to ensure, as much as possible, that the Summit is accessible for everyone. Limited financial assistance is available to help offset travel costs to attend for patients and families who would otherwise not be able to attend due to financial hardship. The Histiocytosis Association hopes that this assistance will offer everyone the opportunity to connect in person and take advantage of this informational and educational meeting.
Please complete this Travel Scholarship Application Form no later than Friday, August 1st. Our team will contact applicants with a decision on a rolling basis; please note that due to limited funds, all requests may not be approved.
Please contact us directly with any questions.
*If you can only join one day of the summit, please reach out to us; we will work with you on the ticket pricing.
If you have any questions or need assistance with registering, please do not hesitate to contact our team at outreach@histio.org or +1 (856) 589-6606
Click Here To Register!