Chapter members enjoyed a relaxing weekend getaway in the heart of the Shenandoah Mountains September 19-21. 

The HACA Retreat took place at Graves Mountain Lodge in Syria, VA, and kicked off with dinner Friday evening and time to socialize on the front porch of the lodge with a firepit and bluegrass jam session. On Saturday, we had three educational sessions: joint health with Marc Gilgannon of the University of Virginia HTC; "No Need to Bleed" with Michelle Stielper of Biomatrix; and "The Art of Gratitude" with Nick Cady of Sanofi. The kids enjoyed camp activities with a pop-up camp from Camp Holiday Trails. 

Saturday afternoon featured a fun visit to the barnyard, where the kids cuddled with baby goats, as well as a nature hike. The weather was perfect for outdoors activities! Some participants took the time to relax and enjoy a laid-back afternoon. After dinner, everyone gathered in the meeting room for a fun game of Jeopardy before turning in for the evening. Sunday was cool and rainy, and after breakfast, everyone packed up for the drive home. 

We will return to Graves Mountain Lodge next year. Mark your calendar for September 17-19, 2026. 

Thank you to our retreat sponsors: Biomatrix, Colburn-Keenan Foundation, CSL Behring, CVS Specialty, DrugCo Health, Genentech, Pfizer and Sanofi

Thank you to everyone who joined us for HACA’s annual fall family event on Saturday, September 27, at Butler’s Orchard in Germantown, MD! As tradition seems to go, the skies opened up and the rain joined us, but that didn’t slow anyone down or dampen the fun. Families gathered together to enjoy a full afternoon of activities including roasting marshmallows over the fire, visiting the petting zoo, getting lost in the corn maze, and taking hayrides through the beautiful orchard.

Beyond the activities, what made the day truly special were the conversations, the laughter, and the chance to spend time with one another as a community. Events like this remind us how important it is to connect, share experiences, and support each other.

We’re so grateful to everyone who came out and made the day such a success, and we can’t wait to see you all again at our next gathering!

HACA and the Virginia Hemophilia Foundation have set a date for their 2026 Richmond Days advocacy event: Sunday, January 25-Monday, January 26. 

With the Virginia governor's election coming up in November, as well as all 100 seats in the House of Delegates, we will have our work cut out for us next year. We expect to be talking about prescription drug affordability boards (PBABs) and how they would affect people with bleeding disorders and other rare diseases, as well as educating new representatives about the needs of our community and the importance of access to all therapies. Mark your calendars for that important event - HACA will pay for overnight accommodations if needed. 

We are also teaming up for our advocacy stakeholders and education meeting coming up virtually on Thursday, November 6, from 4-6 p.m. Join fellow Virginians and community stakeholders from across the bleeding disorders community for an engaging virtual education session focused on advocacy. Stay informed with the latest state and federal advocacy news, connect with community members, and collaborate on improving the lives of those affected by bleeding disorders. If you haven't participated in advocacy events in the past, this is a good way to learn more and prepare you for future opportunities. And even if you are not a Virginia resident, you are welcome to join, especially since we will be talking about federal issues as well. Click here to register. 

Washington Days, NBDF's annual advocacy program that brings in hundreds of advocates from around the country to our backyard, will take place March 5-7. Stay tuned for more details on how to register before the end of the year. 

Our colleagues at the Hemophilia Foundation of Maryland hold advocacy events for Maryland residents, so keep an eye out on their website and social media for advocacy updates, calls to action and events.  

Industry News

New approval expands indication for recombinant vWD therapy

Star Therapeutics receives more funding for its vWD therapy

Consumer News

WFH globalizes global community to achieve milestone revisions to WHO EML

Pilot study yields insights on underserved groups in bleeding disorders community

Spinal stenosis may be complication of aging in hemophilia patients

Want to register for a HACA event? You can do that through our weekly Chapter Connection email, or you can go here on the HACA website to check out the calendar of events. 

Here are some upcoming events: 

Saturday, November 8-Sunday, November 9 - Education Event for Spanish Speakers

Sunday, December 7 - HACA Holiday Gathering, Stacy Sherwood Center, Fairfax, VA

Saturday, March 21, 2026 - Chapter Education Day

Saturday, May 16, 2026 - Factor Dash 5K and Walk