SwanBio Therapeutics’ Post

Please join us in welcoming our newest member We Want Life (WWL). WWL was founded by Esraa, a cancer patient advocate who has worked with thousands of patients since 2011. She gained in-depth experience in five years and learned valuable insights that led to the establishment of WWL. Patients have something to say, patients have useful input for the policy makers. Patients need guidance to say their insights in a useful way. Patients are the end users of the health care system. Patients need a chair at the table where decisions are made. Patients need training and inspiration to be able to earn the chair. Patients need this chair because they need life to be more precious, they need a quality life, so it is time to start our patient advocacy group, because we all want a life! Empowering patients to positively impact the healthcare system in the best possible way. Learn more: https://lnkd.in/eGAhf8cp

Love everything about this! Check out the video link along with Michael's words

No one understands the patient experience better than families who have walked that road themselves. In December 2023, we launched the Patient and Family Seal of Collaboration, a program to identify and celebrate projects that incorporate direct input from families. In the first 6 months, we’ve already awarded the Seal of Collaboration to 8 projects – and there are more in the works! These include: • A Family Viewing Screen to see your spot in line for walk-in lab or radiology services. 🖥️ • A Roadmap to Discharge for heart patients. 🗺️ • A Rare Disease Research Agenda to prioritize projects that matter to families of kids with genetic conditions. 🧬 Learn more or share your idea here: https://cmkc.link/3VR5Bff

CENTOGENE's multiomic data insights support the end-to-end Pharma drug development workflow across all disease areas, especially rare and neurodegenerative. Learn how we support real-world evidence & registries for Fabry Disease with LaTina Green at the FSIG Expert Fabry Conference, and how we accelerate and de-risk clinical trials with Mario D'Alessandro at SCOPE!

Sobering statistic: Almost 1 in 3 sarcoma patients wait over 6 months for a diagnosis after their initial appointment. This Sarcoma Awareness Month, we’re determined to change that. Learn the signs, spread the word, and help us ensure faster diagnoses. Your knowledge could be life-saving. Explore more at buff.ly/3zJEPww #DontDelay #SarcomaAwarenessMonth

🌟 Big news for the GSD IV and APBD community! 🌟      As part of our patient engagement services, Humanized Solutions, is proud to support the Adult Polyglucosan Body Disease (APBD) Research Foundation in hosting the virtual APBD and GSD IV Focus Group meeting on May 6, 2024 (11am-2pm ET). This meeting stands as a beacon of hope and innovation, dedicated to unveiling new pathways and support for families facing the challenges of Glycogen Storage Disease Type IV (GSD IV) and Adult Polyglucosan Body Disease (APBD).      Why attend?    -Understand the diverse diagnostic journeys within the GSD IV community.    -Gather insights into the unique needs and challenges faced by the GSD IV community...and more!     📩 We believe in the power of community and the impact of knowledge. Invitations are extended by direct invite. If you’re interested in learning more, please reach out to us at: patientadvocacy@humanizedsolutions.com #APBD #GSDIV #RareDiseases #PatientAdvocacy #CommunitySupport #HealthInnovation #PatientEngagement #DiseaseAwareness #HumanizedSolutions 

Is participant non-adherence impacting the success of your remote clinical trials? Explore three actionable solutions outlined in this article, empowering you to improve trial outcomes by fostering participant compliance. Gain insights here: #mSafety #Sony #clinicaltrials #digitalbiomarkers

In today's digital-first world, establishing trust with patients is increasingly important for enrolling them in clinical studies. In this webinar, you will learn practical and effective ways to build trust with patients!

Here's a thought experiment - What defines an MS expert? One response is that it's an individual with many years of research and clinical expertise. Indeed this is one way to consider MS expertise. There is another way to look at MS expertise - through the lived experience of people with MS. Viewing expertise through this lens means that there are nearly 3 million MS experts worldwide. People with MS must be engaged to bring their unique perspectives and expertise to inform our drive to cure MS. During last year's ECTRIMS MSMilan 2023 Congress we saw a great example of what this engagement can look like. The ECTRIMS Patient Community Day brought together people with MS, NMOSD, and other demyelinating diseases, researchers, and patient organization leaders for conversations about progress, challenges, and opportunities for impact. In this ECTRIMS podcast, National MS Society leadership volunteer Bonnie L. Higgins and I joined Brett Drummond on the ECTRIMS podcast for a conversation about the ECTRIMS Patient Community Day. We shared our thoughts as a person living with MS (Bonnie) and a patient organization leader (Tim) on the importance of creating these opportunities for collaboration between patients, researchers, and organizations. Thanks to ECTRIMS and Brett Drummond for inviting us to share our thoughts on this important initiative. Together we are stronger. #ms #multiplesclerosis

Fostering global collaboration in rare disease research is something we strive for. We have been able to realize this in the CDKL5 Registry, built on the Pulse platform. By recognizing cultural differences and making it available in 10 different languages, we have been able to bring in participants from nearly 50 countries. This has allowed us to capture high-quality data in a way that can improve the lives of patients, their families and the advocacy groups we partner with. In honor of the CDKL5 Forum kicking off later this month, we want to share a video featuring our Founder & CEO Dr. Femida Gwadry-Sridhar and the Chief Scientific Officer from the LOULOU FOUNDATION Dr. Dan Lavery that was shared at the 2023 Forum. They discussed aspects of the CDKL5 Registry design such as: ·        Why the registry is patient-facing ·        Measures taken to reduce time to enter data for caregivers and parents ·        The focus on patient data that is difficult to capture in a clinical setting Despite CDKL5 being a rare condition, there is a large and passionate community of advocates across the world working to improve the lives of patients and their families. You can learn more about the different groups that are part of the CDKL5 Alliance from their profiles below: HOPE4HARPER, CDKL5 Insieme verso la cura, CDKL5 Deutschland e.V. Österreich Schweiz, CDKL5 Alliance Francophone #CDKL5 #PatientAdvocacy #RareDisease