CompCure

CompCure is going global! With the vision to restore health and hope of everyone affected by complement-mediated kidney diseases. With the mission to ensure that complement-mediated kidney diseases are fully understood, early diagnosed, and effectively treated. With commitment to build the globally leading evidence base to support better outcomes for all patients with C3G and IC-MPGN. We would like to thank everyone who contributed to our refreshed strategy 💛

It was wonderful to be at the #ESPN2024 Paediatric Kidney Week in Valencia. A unique opportunity to connect with existing and potential new partners, and to explore the many advances in paediatric nephrology, which were proficiently discussed throughout the scientific program. Obviously Marianne Silkjær Nielsen and Sebastian Myrup Hansen especially enjoyed the academy on complement related disorders, which was co-chaired by Nicole van de Kar. It was also extremely encouraging to discuss CompCure’s strategy during the Steering Committee Meeting, which was excellently led by Franz Schaefer and PhD. MD. Joanna Śladowska-Kozłowska. We have exciting plans for the future, and we are looking forward to share more 💛 Thank you ESPN - European Society for Paediatric Nephrology for hosting- and Gema Ariceta for chairing an outstanding meeting ⭐️

The marking of C3G Awareness Day continues 🗓️ At CompCure we are dedicated to improving the lives of patients and their families 👨👩👦 affected by rare kidney diseases with focus on C3G and IC-MPGN. Our mission is to ensure that these two rare kidney diseases are fully understood 📚, early diagnosed, and effectively treated. Through awareness, collaboration 🤝 and advocating for public health plans to address the unmet needs in rare kidney diseases, we aim to drive innovation in care and create better outcomes for patients 💛 🙏European Reference Network, ERKNet, European Renal Association (ERA), International Society of Nephrology, and Wunders.dk

We continue to mark C3G Awareness Day 🗓️ Rare kidney diseases, including C3G and IC-MPGN, create significant uncertainty for those affected 💛 National kidney health plans could support optimal care and better outcomes for all afftect patients and their families 👨👩👦. 🙏 European Reference Network, ERKNet, International Society of Nephrology, EKHA - European Kidney Health Alliance, European Renal Association (ERA)

Today we mark C3G Awareness Day 🗓️ The lack of awareness 🎗️ and focus on rare kidney diseases has consequences for the affected individuals, their families 👨👩👦 and society. For the ones affected by C3G and IC-MPGN, which are two rare complement-mediated kidney diseases, the journey from early symptoms to diagnosis and optimal care often involves lengthy hospital 🏥 stays and intensive care. Early detection can significantly improve patient outcomes and provide a clear path to effective treatment. This is why we advocate for implementing national screening programs 💛 🙏European Reference Network, ERKNet, EKHA - European Kidney Health Alliance, International Society of Nephrology

This weekend we had the great pleasure of hosting the aHUS, C3G and IC-MPGN patient conference in Berlin together with the German self-help group for complement-mediated diseases. There were more than 65 participants, primarily from the German speaking region, but also from other European countries and beyond. We would like to extent a special thank you to the presenters for very interesting presentations about the diseases, their underlying biology, the therapeutic-, psychologic-, and dietary aspects, etc. We are also very thankful to the patients and caregivers who openly shared their experiences and learnings. 💛 It was touching and reassuring to experience the strong level of engagement and support between the participants. We are all stronger when we share our knowledge, work together and support each other across functions and boarders. Last but definitely not least, we want to thank Novartis and Alexion Pharmaceuticals, Inc. for supporting the event, both financially and educationally. 🙏

It was a huge pleasure to participate in the CORD Summit over the last days. CORD is the biggest Organization for Rare Disorders in China. The commitment and energy evolving around concrete proposals on how to address the unmet needs in rare diseases were both inspiring and encouraging. I am particularly thankful for the opportunity to present CompCure and for many engaging interactions with the leadership of CORD as well as Chinese experts in rare kidney diseases on opportunities for future collaborations with focus on complement-mediated kidney diseases 💛

It is with deep gratitude that we can share that 20 hospitals from Europe and beyond are currently participating in the development of CompCure's registry. Additional 35 centers are working on joining us in the months to come. Just a few years ago, the future looked bleak for people living with C3G and IC-MPGN. Today there are many reasons to be hopeful: Promising candidates in late-stage development, productive cross-functional collaboration, increasing global commitment to share data and build evidence, efforts to increase the public awareness, and commitment to address the general unmet needs across common and rare kidney diseases, etc. A huge thank you to all the patients and physicians who trusts us with their data, to our partners and hereunder ERKNet European Reference Network, Novartis and Sobi - Swedish Orphan Biovitrum AB (publ) and all the experts in our steering committee for strong commitment and collaboration on making 'the impossible' possible and within reach. If you are interested in learning more about CompCure and our activities to improve outcome in complement-mediated kidney diseases, we are looking forward to hear from you.

On #WorldOrganDonationDay, we honor the pioneers of life-saving transplants. In 1954, Ronald Lee Herrick made history as the first living organ donor, giving a kidney to his twin brother. This groundbreaking work earned Dr. Joseph Murray and Dr. John Merrill the Nobel Prize in 1990. The Declaration of Istanbul continues their legacy, promoting ethical organ donation worldwide. Learn more: https://ow.ly/FpNo50SWMlR #OrganDonation #EthicalTransplantation #GiftOfLife #KidneyHealthMatters

In Europe today, the burden of #ChronicKidneyDisease is considerable and continues to grow. To turn the tide of the increasing impact of #CKD, #prevention and #research into #kidneydisease are crucial, and the #EU has a key role to play! 👉 Discover and endorse our Kidney Manifesto: https://bit.ly/3ProQZ1