International Myeloma Foundation’s Post

This Rare Disease Month or simply in 2024, will you commit to helping fundraise to support continued research, drug development, awareness and advocacy? https://lnkd.in/gHBMyAyB #curegm1 #rarediseaseday #hope #fundraise #donate #nonprofit Rare Disease Day

💙 Today is #GivingTuesday❗ Help us give children and young adults with #Progeria a brighter future❣️ 💙 Help us reach our $20,000 Giving Tuesday goal – Please donate TODAY❣️ https://bit.ly/PRFDonation 💙 Check out how far we’ve come: Previous studies showed that #lonafarnib, the only FDA-approved treatment for Progeria, increased lifespan on average by 2.5 years. Now, time and our new biomarker test have demonstrated that life expectancy for those on the drug for 10 years or more increases by almost double that figure, to an average of 4.5 years. This represents more than a 30% increase in lifespan - AMAZING❣️ #ClinicalTrials #progeria #findthecure #lonafarnib #ProgeriaResearchFoundation

We’ll be at PReS Congress this week sharing some of our latest research findings and best-practice projects. We are also representing ENCA as board members helping to advance patient-care in JIA globally. PReS is a European scientific society for healthcare professionals in the field of paediatric rheumatology. It is conferences and congresses such as this that enables researchers, clinicians and patient organisations to come together, learn from each other and hear about the latest research developments in the field of JIA and other paediatric rheumatic conditions. Several of the research projects that we are currently involved in have begun from conversations at congresses like PReS. We’ll be live-tweeting from PReS later in the week so keep an eye on our social media channels. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #PReS2023

‘Fair market value’ is a critical yet confusing issue for charities and industry trying to work together across the UK and Ireland. So charities led by steering group; Cancer52, HRCI - Health Research Charities Ireland, Patient Information Forum (PIF), National Rheumatoid Arthritis Society (NRAS) gathered earlier this week to continue the work on setting new standards and developing guidance. Our next step … a virtual workshop on Fair Market Value on Wednesday 3rd July, please email [email protected] for further info by COP Monday 1st July. #healthcharity #pharmaceuticalindustry #fairmarketvalue #patients

BreastCancerTrials.org is committed to making trial information and trial matching accessible to all, and our mission is made possible by the generosity of donors and sponsors. If you’d like to consider getting involved or sharing more information with family or friends, visit our website//bit.ly/48eK5Ve . . . #clinicaltrials #cancertrials #breastcancertrials #breastcancerresearch #breastcancertreatment #breastcancersupport #clinicalresearch #cancerresearch #Breastcancertherapy #breastcancermedicine #breastcancerpatients #womenshealth #breastcancercommunity #diseaseresearch #datacollection #cancerdata #researchdata #findacure #NonProfit #healthequity

🌟 A remarkable stride in medical research unfolds! With the insightful work of Drs. Dulski, Stanley, Chitu, and Wszolek, we're glimpsing the potential of glucocorticosteroids having a possible protective effect for CSF1R mutation carriers. To everyone invested in the journey toward better health—this is an update you won't want to miss. Join the conversation, spread the word, and be a part of this exciting chapter in medical science. Together, we're moving forward to a future where every discovery brings us one step closer to healing and hope. Donations: If you are interested in donating to research, or to a multicenter collaboration to provide further evidence on GCs please donate at https://lnkd.in/gWpGGtis. Please note that you would like your donation to be used towards research. For more information please refer to the full publication: https://lnkd.in/gJ8jQgC7 #RareDisease #CSF1R #ALSP

Sarcoma UK is taking action. We're racing against time: For every 1 cm growth in a soft-tissue sarcoma, the chance of cure drops 3-5%. Every day counts with sarcoma. Here are some key areas we are working on to improve sarcoma outcomes: ➡️ Our 'Delays Cost Lives' report highlighted the urgent need for policymakers to prioritise faster and more accurate diagnosis. ➡️ We collaborate with partners to investigate why diagnostic pathways for suspected sarcoma patients vary. ➡️ Since 2009, we have invested almost £7 million in 87 research projects across the UK. Our research programme is shaped by the perspectives of patients and their families. By promoting awareness, funding research, and advocating for better diagnostic practices, we are making strides in the fight against sarcoma. For more information on our work and how you can get involved, visit sarcoma.org.uk/sam #SarcomaAwarenessMonth #DontDelay #Charity #Sarcoma

We are on a mission to change this devastating statistic 💔 As the largest nonprofit in the world solely focused on accelerating a cure for #myeloma, we are committed to: 💉Driving the development and delivery of next-generation therapies 🔬Leveraging data to identify optimal and more personalized treatment approaches 📖Empowering myeloma patients and the broader community with information and resources to extend their lives Consider donating today to support our mission: https://ow.ly/zrHR50R3LGY #MyelomaAwarenessMonth