Bleeding Disorder News # 112: One Drop Pivot, 2026 Events and Giving Tuesday

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Bleeding? That's what we do!

Hi, Many years ago, I ran an exercise at an all staff retreat for a former job. The idea was for each person to consider what they wanted to tend to in the coming months; individually, within your family, as a community. How will you tend to the needs of your family? Your community? What will you do to nourish your own needs? What roots are you planting? What needs to be weeded? The Tend exercise is a helpful framework as we enter the holiday season in earnest. When I did the event in person, everyone received a tiny succulent plant. Digital communications don't allow for tiny plants but hopefully this idea takes root as you are headed into a busy season.    As many of you know, the CHES team decided to postpone our ultra-rare conference, OneDrop, until 2026. It was a challenging decision where we had to weigh the needs of many. In the end we decided it would be irresponsible to bring in over 100 community members from across the country when the flight status for many was unreliable at best. One Drop has moved to February 27-March 1, 2026 in Tampa. We've been in communication with all attendees and are looking forward to OneDrop25 2.0 in a few months!  Please be sure to check out the upcoming Hermanas de Sangre webinar- details are below! Be kind to each other, Heather Advertisement One Drop - Ultra Rare Bleeding Disorder Consortium  CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive, and consistent education for the ultra-rare community since 2012. As noted above, the CHES team has postponed One Drop to February 27-March 1, 2026.  We are working diligently with our partners and Subject Matter Experts to continue with programming as planned, including the FX-tend Post Con supported by Kedrion Biopharma. The FX-tend Post Con will explore the difficulties in creating a community for Factor X patients, how the disorder and lack of information affect quality of life, and the need for more genetic data in research to improve access to diagnosis, care and treatment. CHES News   The CHES staff is close to finalizing dates and locations for 2026. Stay tuned here, and on our social media channels (Facebook, Instagram), and LinkedIn for updates on 2026 opportunities. As always, CHES is grateful to our funders and community for the support! Please continue to spread the word about CHES. We welcome new individuals and families and remain true to our 3 pillars:   Women -  Ultra-Rares  -  Inhibitor Community Save the Date Postcards will be arriving in mailboxes in January 2026. Have you moved? Changed your contact information? Please update here. Giving Tuesday Giving Tuesday is recognized globally as a day that encourages people to do good. Every act of generosity counts! If you cannot afford to DONATE to CHES, consider checking on an elderly neighbor, sending a thank you note to your hematology team, dropping off cookies at your local fire department. Inhibitors Factor 8 variants and inhibitors https://onlinelibrary.wiley.com/doi/10.1111/hae.70143 Hemophilia World Federation of Hemophilia released their gene therapy guidelines for hemophilia. https://onlinelibrary.wiley.com/doi/10.1111/hae.70113 Marstacimab and bleeding rates https://www.hematologyadvisor.com/news/hemophilia-marstacimab-bleeding-rates-well-tolerated-treatment-risk/ Renal biopsy and desmopressin https://bioengineer.org/desmopressins-role-in-renal-biopsy-bleeding-outcomes/#google_vignette Vitamin K defifciency and bleeding disorders https://conexiant.com/pathology/articles/hidden-vitamin-k-deficiencies-driving-bleeding-risks/ Bits and Bobs ACA and premiums https://kffhealthnews.org/news/podcast/what-the-health-421-affordable-care-act-enrollment-premiums-shutdown-congress-november-6-2025/?utm_campaign=KHN%20-%20Weekly%20Edition&utm_medium=email&_hsenc=p2ANqtz--1Fkcr4_Ap5fhAmwtjUl5aJXc_ihcfJ9otI01mRhkDiurvLYbKWfZzZnL9jOKLRm8coEQI6ky2Lzw0Z5G5xex0UlmHzA&_hsmi=388911981&utm_content=388911981&utm_source=hs_email Extended indication for vonvendi in the European Union. https://www.medscape.com/viewarticle/expanded-indications-hem-onc-antibiotic-drugs-2025a1000vy6?form=fpf Advertisement Hermanas de Sangre te invita a participar en una sesión educativa el 15 de diciembre a las 8 PM (hora del este), 5 PM (hora del oeste) donde tendremos a Carolina Castillo, LPC.  Ella nos dará una sesión donde aprenderemos a manejar nuestro bienestar emocional en medio del actual clima político y migratorio. CHES quiere aportar una herramienta y un espacio para platicar de forma segura.  Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders That's a wrap on CHES Events 2025! THANK YOU to each person who attended, supported, volunteered, spoke, and shared their experience and humor with the CHES community! Check out our Library of resources for women with bleeding disorders!   Supported by an educational grant from Takeda Pharmaceuticals America, Inc Did you know CHES is now a 501(c)3? Since 2015, nSpiration Foundation has collaborated with CHES to further its mission to serve those with bleeding disorders and other chronic conditions. Effective 01/01/2023 nSpiration and CHES have merged to remain a non-profit committed to serving the needs of the community. Want to aid CHES Foundation in future endeavors? Support CHES Foundation to maintain its critical programs by donating. With your help, we can:   Sustain and grow our unique events Continue educational programs and informative communications Tailor resources specifically for the bleeding disorders community Consider making a monthly re-occuring contribution, even $5 would make a huge difference!  Click the button below and give today. Older PostBleeding Disorder News # 111: GFM Update, Emotional Challenges and the upcoming holiday mental load Recent Back to News Back to Top Clinical Trials Find clinical trials in your area. CHES is not responsible for claims, info, or advice given on this site. Notifications Sign up for your favorite events. Receive periodic info on programs including dates, locations, and open registration. Or update your preferences if you've already signed up for notifications. CHES Foundation, Inc. nSpiration Through Education 84 Beach Street, Middleboro MA 02346 Ph: 781.878.8561 Click Here to Donate