Bleeding Disorder News # 111: GFM Update, Emotional Challenges and the upcoming holiday mental load

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Bleeding? That's what we do!

Hi, I've been giving a lot of thought to the emotional impact of living with a chronic condition. The physical aspects are difficult, don't get me wrong, but I sometimes think the mindshift that needs to happen mentally and emotionally can be more burdensome. We go from feeling happy go lucky to feeling why me. Coincidentally while researching articles from this newsletter, I came across a wonderful article that cites a study written up in Haemophilia about disease burden (see below for link to the whole article.) While I understand it is referencing people with hemophilia, I feel like the conclusion is applicable to any chronic condition. This is the part that most stuck out to me: "Physical and emotional impact were most affected by treatment burden, while physical functioning, pain interference, depression, and anxiety were most affected by disease burden."   I don't have any specific kernels of wisdom to share but I do want to call out the importance of continuing to shine light in dark places and to emphasize the importance of mental health. Regardless if it is a treatment or disease burden, it's a burden. And as a wise woman once said to me, "If you think it's a problem, it's a problem." (Shout out to the incomparable Dr. Joanna Davis).   This is a rambling way to say that as the holidays approach, share the burden. The physical burden is often not shareable (it's your body and pain) but the mental burden IS shareable. Reach out to a friend, talk to your HTC, connect with the community. We may all look and talk and vote differently, but on the inside, we are all the same. We want to be seen, heard, and supported.  Be kind to each other, Heather 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. CHES Foundation, Inc is honored to partner with Kedrion at the CHES One Drop conference for the FX-tend Post Con for individuals living with FX deficiency (an ultra-rare bleeding disorder). The focus group 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. Virtual attendees are welcome- please contact info@ches.education if you have FXd and are interested in attending virtually. Check out more about CHES's unique OneDrop program here! Advertisement 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 and the inhibitor community. Nonprofit News You may remember from our last edition of the Digital Digest, GoFundMe created 1.4 MILLION fundraising pages for US based nonprofit organizations without their consent or knowledge. After considerable effort, CHES was able to remove our page. And we happily take donations of any amount to support our vision!  Ultra-rares Gene Therapy development with possible implications for Glanzmann Thrombasthenia https://www.mcw.edu/mcwknowledge/mcw-stories/new-gene-therapy-for-severe-hemophilia-a-developed-and-tested-at-mcw-achieves-promising-results Series C financing for HEMAB Therapeutics https://www.prnewswire.com/news-releases/hemab-therapeutics-announces-157-million-series-c-financing-to-advance-next-generation-treatments-for-underserved-bleeding-disorders-302594712.html?tc=eml_cleartime Disease Burden in Hemophilia  This the article I referenced in the intro! https://www.docwirenews.com/post/patients-with-hemophilia-face-significant-burden-despite-treatment-type-or-disease-severity Women Postpartum hemorrhages https://jamanetwork.com/journals/jama/article-abstract/2840462#google_vignette Mean platelet volume as biomarker for anemia https://www.geneonline.com/study-identifies-mean-platelet-volume-as-biomarker-for-anemia-and-platelet-disorders-in-metabolic-syndrome-patients-in-northwest-ethiopia/ 340B updates Growth in the 340B market https://schaeffer.usc.edu/research/misaligned-incentives-340b/ 340B oversight https://www.fiercehealthcare.com/regulatory/senators-open-calls-greater-340b-oversight-spending-requirements-remain-wary-new?utm_medium=email&utm_source=nl&utm_campaign=HC-NL-FierceHealthcare&oly_enc_id=0239B6733001A2E Bits and Bobs Alternative Funding Plans https://www.drugchannels.net/2023/05/employers-expand-use-of-alternative.html ACA Premium hikes expected https://www.fiercehealthcare.com/regulatory/average-aca-premiums-set-30-spike-washington-post?utm_medium=email&utm_source=nl&utm_campaign=HC-NL-FierceHealthcare&oly_enc_id=0239B6733001A2E Underrepresentation of hemophilia B in research https://pubmed.ncbi.nlm.nih.gov/41080961/ Sexual function and wellbeing in men with hemophilia https://www.hematologyadvisor.com/news/sexual-function-well-being-men-hemophilia-discussed-rarely-treatment-risk/ Supplements and bleeding disorders https://www.shefinds.com/collections/dangerous-supplements-interact-medications/amp/ Tumeric water https://www.msn.com/en-in/health/other/turmeric-water-in-the-morning-can-cause-blood-thinning-and-liver-issues-know-side-effects/ar-AA1MJ8Ws?cvid=68fda08a0dd543aeac02f542dd267ae4&ocid=hpmsn 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 Upcoming CHES Events 2025 OneDrop (Ultra-Rare Consortium): November 14-16, Tampa, FL Happening next week!  We are excited to share education, connections, and community with you!  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. Click Here to Donate Older PostBleeding Disorder News # 110: 2026 CHES Events are coming! GFM Fraud and Gene Therapy Update 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