MDS Alliance

📆 Blood Cancer Awareness Month 2024 is just a week away, reminding us that together, we can achieve more for those affected by myelodysplastic syndromes (MDS). This September let’s join hands to ensure better care, treatment and outcomes. Be a part of the conversation as we talk and #ThinkMDS to raise awareness and drive positive changes for MDS patients’ lives.

The National Comprehensive Cancer Network (NCCN) updated its Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes (MDS). RYTELO™ (imetelstat) is now recommended as a Category 1 and 2A treatment for symptomatic anemia in patients with lower-risk #MDS. This update follows the recent FDA’s approval in June 2024 of #RYTELO (imetelstat) for adult patients with low- to intermediate-1 risk MDS who are transfusion-dependent and who have not responded to, lost response to, or are ineligible for erythropoiesis-stimulating agents (ESAs). Read the full press release here: https://shorturl.at/ZG5bk #Research #BloodCancer

The MDS Alliance’s member, Lyle, has presented a new children’s book 📕 , Luas and Lilo's Mom Gets Sick, written by Olivia Løvenstedt. Olivia, a lymphoma survivor and mother of two, created this book to support children whose parents or loved ones are battling #bloodcancer. Olivia shares, “The book is made for children whose parents or someone they know has blood cancer. It's inspired by my own journey and is a tool I wish my children had when I was sick myself.” The book is published in Danish although Lyle hopes to translate it into English. It can be ordered for free via Lyle's webshop here: https://t.ly/cRWPB Congratulations to Olivia on this wonderful work! 👏 #MDS #resources #patientadvocacy

Meet the MDS Alliance Member: MDS Foundation, Inc. This non-profit advocacy organisation has been a cornerstone of support for over 30 years, assisting patients, their families, and healthcare providers facing MDS and related diseases. This multi-disciplinary organisation unites patients, caregivers, and healthcare professionals to advance research, treatment, education, and support for MDS. The Foundation believes that international collaboration is key to finding cures and offers a wide range of resources, including 📚 disease information, 💼 insurance assistance, 📰 publications, 💬 patient advocacy groups, 💰 research funding, and 🩺 professional education. Let's applaud their invaluable contribution to the MDS Alliance! 👏

I am very proud to participate, as a patient expert and advocate, in the First International Leukemia Symposium to be held in the College de France in Paris.

🔍Understanding MDS: What causes Myelodysplastic Syndromes (MDS)? Although the exact cause of #MDS is often unknown, several factors like the age or previous cancer treatments can increase the risk. Learn more about MDS and its causes to stay informed and proactive about your health! 🩸 #MDSAwareness #Bloodcancer

When you're surfing the internet looking for some updated information about MDS, it's crucial to find trustworthy info. Stick to reliable sources like government sites and healthcare databases when looking up health stuff. Whether you're checking symptoms, looking into treatments, or trying to stay healthy, trust these sites. Your health is important, and good info is your best friend! Stay sharp, stay informed! Check out some tips and useful websites here: https://lnkd.in/eYJbM6Hz

Meet the MDS Alliance Member: Connaitre Combattre Les Myélodysplasies. Since 2006, CCM has been the only organisation in France dedicated to supporting patients with myelodysplastic syndromes (MDS). CCM aims to provide MDS patients and their caregivers, wherever they live, with access to the latest resources and information on MDS. CCM helps patients better understand MDS by organising regular doctor/patient information meetings, contributes to advances in patient care through collaborations with international associations and laboratories and supports research into new treatments by helping draft protocols for clinical trials and collaborating on national and international surveys. Let's applaud CCM for their invaluable contribution to the MDS Alliance and their unwavering support to the community! #MDS #MeetOurMember

Join us at the THEMA Saint-Louis Research Institute's first International Symposium on 9th and 10th September 2024 at the Collège de France in Paris! This event will gather international researchers to present current developments and challenges in leukaemia research and treatment. We’re happy to announce that the MDS Alliance will be contributing to the symposium by bringing the patient voice to the forefront in the session Quality of Life Matters: A Patient Perspective, led by Jacqueline Dubow. Registration is free and available via this link: https://lnkd.in/ejj8DsKD

🩸 Awareness about Myelodysplastic Syndromes (#MDS) is crucial for early diagnosis and better management, just like any other health condition. Identifying the key symptoms can help you recognize when it's essential to seek medical advice. Spread the word about MDS and help others understand the importance of early detection. If you or someone you know experiences these symptoms, consult a healthcare professional for guidance. https://lnkd.in/dhEyF-fe