Travere Therapeutics’ Post

Rizwana's Story: What is Glanzmann's thrombasthenia (GT)? Join us as Rizwana shares her journey with Glanzmann's, shedding light on her condition and how it impacts her daily life. Rizwana became the first person in the world to receive a new, potential treatment. 🏥 You can learn more about Glanzmann's and Rizwana's journey taking part in a Richmond clinical trial over the next few weeks as we'll be sharing snippets of her experience.  #ClinicalTrial #GlanzmannsThrombocytopenia #ClinicalResearch #AdvancingHealthcare #MedicalAwareness #RareDiseases

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

As we approach Rare Disease Day, it’s a moment for us at Arphio, and indeed the global healthcare community, to reaffirm our commitment to a cause that affects millions yet remains in the shadows of mainstream medical discourse. In a world where the rarity of a condition often translates to a scarcity of resources, awareness, and treatment options, we stand in solidarity with patients, families, and researchers striving for breakthroughs. Our focus on orphan products isn't just about business development, it's about bridging gaps, fostering partnerships, and bringing hope where it's needed most. This Rare Disease Day, let's renew our dedication to making the invisible visible. Together, we can turn rare into a common cause for attention, advocacy, and action. #RareDiseaseDay #OrphanDrugs #HealthcareInnovation #RareButNotAlone

World Lymphedema Day! #lymphedema #lymphcastpodcast

Exciting Webinar Alert: Myasthenia Gravis - Insights and Support for Patients! Join us for an enlightening session on Myasthenia Gravis (MG), designed to empower patients, families, and healthcare providers with the latest insights and supportive resources. Whether you're newly diagnosed, a long-term fighter, or a healthcare professional, this webinar is a must-attend event! 📅 Date and Time: June 25th, starting 9:30 CET 📍 Location: Online - Register to secure your spot! Webinar Highlights: Gain in-depth knowledge about MG from top neurologist Dr. Francesca Cortese. Discover how the EuMGA - European Myasthenia Gravis Association- supports the MG community through advocacy, resources, and community-building initiatives. Interactive Q&A: Have your questions answered directly by experts and connect with others in the MG community. Don't miss this opportunity to learn more about managing and understanding Myasthenia Gravis, network with others, and find out how you can get involved in making a difference. Let's come together to support each other and advance MG care! 🔗 Register here: https://lnkd.in/da_RNJM3 📢 Spread the word and help us reach everyone who might benefit from this free webinar! #MyastheniaGravis #MGAwareness #MGAwarenessMonth #EAMDA #EuMGA #strongertogether #PersonsLivingwithNMD #neuromuscular

What would you do if you had a rare disease that your doctor (and your family) didn’t know much about? For people living with PBC (Primary Biliary Cholangitis), this is their reality. If you’re attending Pharma Market Research Conference PMRC Bay Area, mark your calendar for this not-to-be-missed session. Join Ben Kozub and Mark McLaughlin of CymaBay, as they share how emotional insights revealed deeper context to bolster their campaign strategy and how story-based empathy led to a deeper understanding and engagement with the PBC (primary biliary cholangitis) advocacy community. From Livers to Living: How CymaBay Flipped the Script from Focusing on a Rare Disease to Hoistic Well-BeingThursday, 6/13 | 9:00 AM PST | TRACK A Connect with the Brandtrust team and pick up our gift of insight (a new book!) at our booth. Not attending but interested in these topics? Connect with us today! #EmotionalInsights #MarketResearch #PMRC

After struggling for years to receive a diagnosis for an autoimmune condition, Laura, a research scientist and mother of four, still must fight to maintain her condition affording copays for doctor’s visits and high prescription costs, on top of working, caring for her family, and helping to coach the local soccer team, Laura wants nothing more than to remain healthy and active. Have you faced challenges like these? Tell us about it or share this post! #SincerelyUs

May is GBS|CIDP Awareness Month! BBS = Guillain-Barré Syndrome and CIDP = Chronic Inflammatory Demyelinating Polyneuropathy. GBS|CIDP Foundation International shares how to show our support for the GBS|CIDP community and take action. https://lnkd.in/eu_ecVi6

Let's meet there and share more insights

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