HACA program manager Robin Monin and board vice-president Kate Greene traveled to Lilongwe, Malawi, in Africa, to explore a possible twinning opportunity with that country's chapter through the World Federation of Hemophilia's Hemophilia Organization Twinning Program. 

Robin and Kate met with representatives of the Society of Haemophilia and Allied Disorders (SHAD), and Thomas Gowa, regional manager for Eastern, Central and Southern Africa for the World Federation of Hemophilia, facilitated and organized the visit.

Kate, Robin and chapter member Jennifer Sleboda began talking about the possibility of twinning back in 2019, before the pandemic. At the time, Robin and Jennifer were both board members. The chapter had an initial meeting with WFH in early 2020, but COVID-19 delayed those plans. 

Flash forward to June 2026, and now-vice president Kate brought up the idea of twinning again with the same team, including executive director Brenda Bordelon. We arranged an initial meeting with WFH and in the course of that call, Evelyn Chadwick, program coordinator for twinning, fellowship and training at WFH, mentioned that they already had a prospect in mind for HACA: the Society of Haemophilia and Allied Disorders. 

In just a short span of time, the HACA team completed the assessment questionnaire and participated in a Zoom call with the SHAD team. Robin and Kate were selected as the chapter representatives for the assessment visit, representing staff and the board. Robin quickly got to work scheduling their flights, making hotel reservations, obtaining a visa and proper vaccinations, working on a presentation about HACA for the visit, and more - all within a little more than a month! 

During the visit, the team shared information about each chapter, visited the HTC at Kamuzu Central Hospital, worked on a SWOT analysis of SHAD, and discussed twinning prioritization activities. After returning, the next step will be to fill out the formal application to participate as twinning chapters. Funding will come from the World Federation of Hemophilia to support the partnership, and HACA will also have some fundraisers to help support the project as well. 

For updates on HACA's twinning project, sign up for the twinning program mailing list. 

HACA celebrated the end of summer on a muggy day at Algonkian Regional Park in Sterling, VA, at the annual chapter picnic. 

About 50 people attended the event on Sunday, August 9, which included lunch from McAlisters Deli There was plenty of time for socializing, with the main entertainment being a fistfight between two strangers under the pavilion and a visit from the Loudoun County Sheriff's Department!  

Next year HACA will be moving the summer picnic to October in hopes of cooler weather. Thank you to our event sponsors: Bayer, CSL Behring, CVS Health, DrugCo Health, Novo Nordisk, Pfizer and Sanofi. 

Several HACA members traveled to Orlando in August for the annual Bleeding Disorders Conference. 

The 4-day event featured a variety of educational sessions, including tracks for women, rare factor deficiencies and vWD. The chapter was able to help several members attend through the Sandi Qualley Scholarship Program. 

Big news: the 2027 BDC is coming back to the DC area! Next year's79th annual meeting will be August 12-14 at National Harbor in Maryland. HACA will offer multiple scholarships to help pay for registration and parking, and for those who have never attended before, keep an eye out for NBDF's scholarship for first-time attendees. We will have the details here in the spring! 

Kids from HACA and the Virginia Bleeding Disorders Foundation enjoyed a week at Camp Youngblood July 12-17 in Charlottesville. 

This year, 14 kids and teens from HACA were able to attend. The week included fun camp activities such as rock climbing, swimming, archery, hiking, arts and crafts and more. 

Parents were able to arrive in Charlottesville on Thursday evening for an educational dinner, and the chapters covered the cost of hotel rooms for families. On Friday morning, most families went over to camp for breakfast with their kids before departure. 

Thank you to our camp sponsors: Bayer, CSL Behring, Genentech, Novo Nordisk and Takeda. 

HACA board member Ben Marcus is featured in a new HealthCentral video that spotlights living with hemophilia B. 

Producers from HealthCentral reached out to HACA in June, and we were able to connect them with Ben. Filming took place in July, and the video went live at the end of the month. 

Click here to see Ben's video. Thanks, Ben, for sharing your story of living a full life with hemophilia B! 

Virginia, the District of Columbia and Maryland all expanded Medicaid coverage under the Affordable Care Act, and changes are coming starting January 1, 2027 for those who qualified for coverage under the expansion. 

The graphics below describe the changes in Virginia and Maryland, and instructions on how to stay up to date with the timeline for the changes. Click here for information on DC Medicaid. 

On Wednesday, September 9, at 2 p.m., the National Bleeding Disorders Foundation and Artemis Policy Group will lead a panel discussion on the Medicaid changes. They will talk about NBDF's efforts on the state and federal levels, and what community members need to do to prepare. Click here to register.