Resources – Articles and Links
- Hemaware: Three Tips on How Men Can Open Up to Their Comprehensive Care Team
- Hemophilia News Today: Study Ties Hemophilia Pain, Infections To Mental Distress
- Mental Health America: Back to School with Mental Health in Mind Free tools for kids, teens, and the adults who support them
- NBDF: Literature Review Reaffirms Clinical Relevance of Von Willebrand Disease Guideline
- RareDisease.Net: Groin Older: Aging With Hemophilia Check out this honest (and hilariously titled) take on aging with a bleeding disorder.
- Remember The Girls has launched Rare Rewritten A campaign to encourage prominent organizations with medical websites to accurately reflect the realities of X-linked conditions.
- Team Impact: Get Your Child In The Game Matches children facing serious illness and disability with college sports teams, creating a long-term, life-changing experience for everyone involved.
Surveys
- Help shape the future of care for von Willebrand disease by taking the 25-minute anonymous PIVOT-vWD survey from DHT.health—open to U.S. adults with vWD or caregivers of children with vWD; participants will receive a $10 Amazon gift card—take the survey here.
- WFH Dental Committee invites patients with inherited bleeding disorders to participate in an anonymous global survey on access to routine dental care and the potential impact of COVID-19, go here to complete the survey.
National Conferences – Upcoming Opportunities
- CHES InhibitCon West in Portland, OR, October 3–5, 2025 For the inhibitor community – covering treatment updates, insurance changes, mental health, venous access, pain management, and more.
- CHES One Drop Rare Bleeding Disorder Consortium in Tampa Fl, November 14–16, 2025 For individuals and families living with ultra-rare factor or platelet deficiencies (FId, FIId, FVd, FVIId, FXd, FXId, FXIII, Glanzmann’s, etc.).
- HFM National Conference for Women and Teens with Hemophilia in Detroit, MI, October 4–6, 2024 In-person and virtual conference focused on supporting women and teens in the bleeding disorders community.
- Coalition for Hemophilia B – Men’s Education & Empowerment Retreat in Stone Mountain, GA, September 18–21, 2025 Retreat for men with Hemophilia B. Selected applicants receive a full travel scholarship (airfare or mileage, lodging, and meals).
- Registration is now open for the free, virtual WFH Global Summit on Women and Girls with Bleeding Disorders, September 25-26, bringing together global experts and advocates to advance care, understanding, and equity for women and girls with bleeding disorders—register here.
