OHSU Innovates的动态

??? Think Again. Think NPC?- a global effort to bring Niemann-Pick type C into the spotlight! We’re proud to share the Think Again. Think NPC?campaign, led by the International Niemann-Pick Disease Alliance (INPDA), which unites non-profit Niemann-Pick patient organizations worldwide. This groundbreaking initiative aims to reduce the time it takes to diagnose NPC by raising awareness among healthcare professionals who may not yet recognize its key signs and symptoms. By encouraging medical professionals to Think Again. Think NPC, this campaign strives to expedite diagnosis, allowing patients faster access to crucial treatment and support ?? Explore more about this important campaign on the Think Again, Think NPC?website and join us in spreading awareness: #ThinkAgainThinkNPC #NiemannPickAwareness #NPC

Our #MMRF Fast Facts in Myeloma series is a collection of patient-friendly one-page guides designed to explain different aspects of having and managing multiple #myeloma. Download one today to learn more about your disease: https://ow.ly/OyYc50QO1uH #MyelomaAwarenessMonth

Over 400 million people around the world are affected by rare diseases. Approximately half are undiagnosed, and receiving a diagnosis takes an average of five years. (Submit your Solution) NGOs and nonprofits have an important role to play in improving the experience and wellbeing of patients with rare diseases.?How can nonprofits use innovation to improve the journey for patients with rare diseases, from diagnosis to treatment and holistic care? (Submit your Solution) https://lnkd.in/dqNJQ3Wc

Last week, Christine Waggoner, founder and CEO of Cure GM1 Foundation, was one of the few speakers invited to present at the FDA's first Rare Disease Innovation Hub public meeting! This groundbreaking FDA initiative marks a significant step forward in accelerating treatments for rare diseases. The Hub aims to streamline development and approval processes while keeping patients' needs at the center - exactly what our rare disease community needs. Through Christine's leadership, Cure GM1 Foundation continues its tireless dedication to advancing treatments for GM1 gangliosidosis. Her voice at this forum represents not just the GM1 community but highlights the urgent reality we face in rare diseases where time is literally life. The FDA's commitment to enhancing collaboration and creating a more efficient pathway for rare disease treatments gives us HOPE. In Christine's words, "Our children are dying and have been dying for decades when possible treatments are known." This Innovation Hub could be the catalyst we need to change that reality. About: https://lnkd.in/gGtpUTKC Please join us in our critically important work: curegm1.org/take-action curegm1.org/donate #RareDisease #FDA #Healthcare #Innovation #PatientAdvocacy #GM1

As a patient and advocate, I have to wonder why so many healthcare conferences regarding RARE Disease, don’t include patients. That is the time to hear, first hand, how this disease affects their patients beyond the clinical aspect. Which is an important factor of disease research. So many speaking engagements have turned patients, like myself, down because it’s limited to those who work In healthcare, science or research. Patients should be the first thought when having conferences. RARE patients should be at the forefront of all conferences, not a last thought. I am striving to work towards the inclusion of patients, no matter the budget. I’d love to hear your thoughts, if you work in RARE disease, on why you believe this is a common occurrence. #raredisease #raredisorder #nonprofit

#Comas may be caused by, or lead to, non-convulsive #seizures, which increase the risk of mortality if not quickly diagnosed and treated. On #WCD2024 learn how you can support efforts to find a cure for coma. #TimeisBrain #NCSE #MoreThanMyBrainInjury https://lnkd.in/g3qmCVug

#ALS/#MND Day Comes and Goes with Only 1 #Copay Assistance Fund Open Another disease awareness day provides another disturbing window into how thin the #copayassistance net for needy patients is. About ALS and MND: #AmyotrophicLateralSclerosis is the best known of a group of #rarediseases called #motorneurondiseases. MNDs are neurologic diseases that lead to progressive motor neuron loss. MNs are the cells that control muscle activity; they are necessary to walk, talk, breath, and swallow. Sadly, many MNDs are fatal. More common in men, MNDs typically first strike between the ages of 50 and 70. The incidence of ALS, the most common MND, is about 2 in 100,000. Almost Nowhere to Turn for Help: I always look on disease awareness days for what assistance is available to newly diagnosed patients. It’s usually a pretty depressing exercise, and it was this time, too, unfortunately. My last review of the 9 established copayment foundations revealed that 8 either had no available fund or, even though a fund existed on paper, it was closed or otherwise unavailable to patients in need. That’s right. Only 1 fund was open to patients. The safety net for these patients is literally hanging by a thread. #lifesciences #charitycare #charity #pap #patientassistance #costsharing

Pinch Me! Some milestones change the course of your life, and today is one of those days. With the announcement of the Cycle 3 grantees for the Chan Zuckerberg Initiative’s Rare As One Program, our foundation has been selected to participate in the Rare As One Program and awarded a 5-year, $800,000 capacity-building grant! Back in 2021, we were one of 20 organizations to receive a Cycle 2 Rare As One grant of $50,000, and we made a strategic decision to invest that money into the growth of our organization. We knew we had to increase our capacity if we wanted to accelerate our path toward a treatment for our kids. In 2023, we used that investment as seed funding to hire our first full-time employee - Gabrielle Rushing, Ph.D., a powerhouse who now leads our science program. Today, I am overcome with emotion and at a loss for words (if you know me, you know I always have too much to say). When I found out we were selected, I sobbed. Since starting this foundation, I’ve had more sleepless nights than during my entire career as an attorney. I know how impactful the CZI RAO program has been for other organizations: advancing research, organizing patient communities, catalyzing collaborations, raising crucial funds, and launching clinical trials. And now, we’re part of that! Investing in growth is scary, especially for rare disease organizations like ours. We are used to squirreling away donations, only wanting to spend our nuts on research. What we see time and time again from organizations who have brought treatments to their children, is that you also have to invest in collaboration, building research networks, bringing researchers and families together, and ensuring that the patient voice is always at the heart of everything. That’s how real progress happens. Collaboration is the heart of innovation! To everyone who supports us on this journey—volunteers, donors, advisors, friends, family, and fellow rare disease advocates—thank you from the bottom of my heart. We can't do this work without you. I can’t wait to meet the other Cycle 3 grantees and start working together to bring treatments to our kids faster. #CZI #RareAsOne #OCNDS #PatientVoice #CollaborationIsKey

#Endometriosis diagnosis and treatment have remained unchanged for decades – despite the fact #Endo is just as common as #Diabetes. ???? Our researchers are at the forefront of developing innovative therapies and diagnostics, striving to uncover solutions for the countless individuals impacted by this disease. ?? Power our endometriosis research today. ?? #Donate before June 30, or read more about our research and Maddy Forster's story ?? https://bit.ly/3ymHzQ0

NEW CASE STUDY: Intermountain Health Digital Grateful Patient Project on Blackbaud Luminate Online. We collaborated with our client on an acquisition effort aimed at past patients. Together, we established a baseline grateful patient journey, created emails that would test content, and automated the experience to screen thousands of people each month. The results? ?? A two-part email series was launched with lots of A/B testing ?? Over 1 million patients received the series in one year ?? 6000+ newly engaged patients were identified for the foundation team to screen and convert into new donors Here's how we did it: https://lnkd.in/gQdSfMiv