Bleeding Disorder News # 121: World Hemophilia Day, PAN and PAF merger and the future of blood safety!

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Bleeding? That's what we do!

Hi, Happy World Hemophilia Day! This important day for advocacy and awareness is celebrated world-wide! Monuments will be lit in red all over the United States and across the world, from the Prudential Center in downtown Boston to Kumamoto Castle in Japan! This day is a great reminder to keep raising awareness about ALL bleeding disorders. Your hemo-hana needs you to stay loud and vigilant! In other news, CHES is one week away from our 2026 LadyBugs event in Williamsburg, VA. This year we are proud to host with the Virginia Bleeding Disorders Foundation. We are grateful to the sponsors who are supporting our event. And we will keep beating the drum to raise additional funds - especially for females. CHES received 48% of the requested funding for this year's event. Many, many, many females are still struggling to be seen, heard, and supported. If you are able, please donate to CHES Foundation or follow us on Facebook to support the MamaBears conducting a popcorn fundraiser of their own! It's officially Spring! Happy Spring! Heather   Inhibitor Family Camp 2026 Update Camp builds social resiliency, independence, face to face connections not achievable behind a keyboard or screen. When you live in a medically complex family, camp is a lifeline.   CHES continues to work with our funding partners to demonstrate the impact and value that Inhibitor Family Camp brings to inhibitor families. Please raise funds, talk to your local rep, and share a testimonial about what camp means to you. Our hope and goal is to bring Inhibitor Family Camp back in 2027. In the meantime, there will be camp activities during our added day of InhibitCon in New Orleans, September 10-13, 2026! The CHES team deeply appreciates your help and support. Advocating and supporting the CHES community and each other is what we do! Janet, Eric, Heather, Chris and Joan Travel Fund aka CHES Champions In 2026, CHES is asking all participants who are financially able to cover the cost of overnight hotel rooms for in person CHES experiences. We know based on years of feedback that people would like to contribute to further CHES’s vision. CHES Champions is set up for donations of any size. With a little love, we can ensure that all of our community members have equitable access to be seen, heard, and supported.  $50= covers the cost of one breakfast meal for one attendee $150= covers a portion of our educational costs $250= covers the cost of a child at a hotel event for a day (food and childcare activities) $500= covers the cost of lodging for one attendee or one family for an event weekend Tax deductible donations can be made to the CHES Champions fund. CHES Champions helps to cover travel costs for our community members who would be unable to attend events without financial assistance.  The Hermanas de Sangre webinar, "Sanación y Autocuidado" presentado por Dr. Johayrs Aybar, was incredible. Stay tuned for a recording on the CHES YouTube channel soon. In the meantime, use the link below to sign up for Hermanas de Sangre and receive details on the next session. If you have already signed up for Hermanas de Sangre, there is no need to sign up again. Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders SAVE THE DATES! - CHES 2026 IN PERSON EVENTS! CHES remains dedicated to offering high quality education and connections with ultra-rares, women and the Inhibitor Community.  Applications open 8-10 weeks prior to the event. Please stay tuned to CHES social media (Facebook and Instagram) and our LinkedIn profile to watch for open dates. Applications will also be linked to this regular Digital Digest as they open.   LadyBugs National Women's Conference: Colonial Williamsburg, VA- April 24-26, 2026 in partnership with the Virginia Bleeding Disorders Foundation (formerly Virginia Hemophilia Foundation)- NEXT WEEK! InhibitCon: New Orleans, LA, September 10-13, 2026 *First day is Leverage in partnership with GutMonkey and camp like activities for families. Applications will open in early June! OneDrop 2026: Tampa, FL, November 13-15, 2026    World Hemophilia Day  More information and resources regarding this important celebration  https://wfh.org/world-hemophilia-day/ Women and Bleeding Disorders Women deserve more. https://www.aol.com/news/women-health-not-niche-issue-190029675.html Bone fracture burden https://onlinelibrary.wiley.com/doi/epdf/10.1111/hae.70182 Merger  The PAN Foundation and the Patient Advocate Foundation are merging. See announcement below https://uniting.patientadvocate.org/  PAN Foundation webinar to explain their new assistance fund, Total Assist (use link below to register and learn more) https://panfoundation.zoom.us/webinar/register/3617754858162/WN_CizQtEfoSqq4eDUxmLF3zQ#/registrat ion Non factor therapy as prophy https://www.hematologyadvisor.com/news/hemophilia-on-demand-therapy-prophylaxis-study-superior-treatment/ Future of Blood Safety In case you missed CHES's social media post about our community member, Shanthi Hedge, and her advocacy work- check it out here! https://sph.brown.edu/news/2026-01-07/student-spotlight-shanthi-hegde?fbclid=IwZnRzaAQpW6RleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEejr3AiAWIfVJidmN7wYt2m9AkE7UD_654PlJjcvU4IBXl4_R-D3A_CfSHnMk_aem_SvoyQdAQ2dTNlwnZJcYqDg   Check out our Library of resources for women with bleeding disorders!   Supported by an educational grant from Takeda Pharmaceuticals America, Inc CHES is now a 501(c)3. Since January 2023, nSpiration Foundation and CHES have merged to remain a non-profit committed to serving the needs of the community. 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-occurring contribution, even $5 would make a huge difference!  Click the button below and give today. Click Here to Donate Older PostBleeding Disorder News # 120: Open for Disappointment, Hemohana and LadyBugs Countdown! 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 16049 Chapel Park Ct., Noblesville IN 46060 Ph: 781.878.8561