// Patient associations/Industry: the key to a positive interaction // What rare disease patients and families want is a simpler life. Discover what makes the relationship between members of a patients’ association and a biotech company work so well in this interview! #kayentis #eCOA #clinicaltrials #raredisease #patientassociation
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New blog post! Read how Ambit elevated traditional rep triggers programs by offering the ability to supplement field efforts with email and NPI targeted media campaigns. Transparent models...continuous optimization...quantifiable results...that's the Ambit way!
In the fast-paced world of biopharma, finding the right patients is crucial—especially when it comes to rare diseases. Traditional claims data analysis has its limitations, but Ambit's Dynamic LeadGen is here to change the game. Dynamic LeadGen is designed to explicitly address rare disease patient finding challenges, setting a new standard in the market, combining transparency, measurable impact, continuous optimization, proactive adaptation, and a client-centric philosophy. Discover how we're reimagining rare disease patient finding and paving the way for a healthier, more equitable future—read our new blog post now: https://hubs.li/Q02xNn1q0 #dynamicleadgen #patientfinding #patientidentification #claimsdata #claimsdatanalysis #ontheblog #blog
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In the fast-paced world of biopharma, finding the right patients is crucial—especially when it comes to rare diseases. Traditional claims data analysis has its limitations, but Ambit's Dynamic LeadGen is here to change the game. Dynamic LeadGen is designed to explicitly address rare disease patient finding challenges, setting a new standard in the market, combining transparency, measurable impact, continuous optimization, proactive adaptation, and a client-centric philosophy. Discover how we're reimagining rare disease patient finding and paving the way for a healthier, more equitable future—read our new blog post now: https://hubs.li/Q02xNn1q0 #dynamicleadgen #patientfinding #patientidentification #claimsdata #claimsdatanalysis #ontheblog #blog
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Developing a therapy for a rare disease is far from standard. @Veristat's scientific experts excel at coordinating the regulatory pathway, patient recruitment, and data collection for such therapies, accounting for 35% of our work. Learn more > https://lnkd.in/eaa7vjqs. #RareDiseaseMonth #RareDisease #UltraRareDisease #Veristat
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Examine the burden of NASH/MASH and gain practical, proactive diagnostic strategies | Recognizing MASH in At-Risk Patients: Seizing Opportunities for Early Detection | 0.5-hour CME/CE | On-Demand Video 1 of 2 | #MedEd #cme #MASH | https://bit.ly/3NeTST4
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Clinical trials are a cornerstone of drug development, but they can't alone capture the many complexities of the lives of patients in an uncontrolled environment. Join our host Kostas Trakas and guest, rare disease patient advocate Joan Paulin, as they dive into the complexities of drug effectiveness beyond clinical trials. Discover what rare diseases can tell us about the importance of post-market surveillance and real-world evidence in painting a complete picture of a drug's impact. Check out the full conversation with Joan here: https://lnkd.in/gxbVFuv3 🌟💬 #DrugDevelopment #ClinicalTrials #RWE #HealthInnovation #RealWorldEvidence
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Are we entering a new era for the treatment of (at least a subtype) of #parkinsondisease. There is room for optimism, as well as caution till we reasonably grasp the effects of GLP-1 agonists on pathogenic processes driving neuronal dysfunction in PD. For a long time, there was a dogma on peptic ulcer disease that it is caused by excessive acid in stomach. Now, we know that the condition can be treated in vast majority by antibiotics to eradicate H. pylori. I am afraid that we face similar dogmas in PD research (ie. role of excessive synuclein accumulation thought as the cause). We shared our reflections on this topic https://lnkd.in/dEgNDtdd
The full results of the phase 2 clinical trial of lixisenatide have now been published. This Cure Parkinson’s co-funded trial has reported positive results, indicating that the treatment may slow the progression of motor symptoms. Find out more: https://buff.ly/4aBOZN2 Van Andel Institute #CureParkinsons #Parkinsons #ParkinsonsResearch #ChangeTheFuture
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HDSA San Francisco Bay Area Chapter Raises Funds To Improve the Lives of Everyone Affected by Huntington's Disease
This first-of-its kind survey has been created by the HD community for the HD community. When you take this survey, you will be informing the FDA, NIH and medical product developers how you describe the challenges of living with HD, manage symptoms, and define the value of new treatments.
HDSA HD Symptoms and Treatment Impact Survey
survey.alchemer.com
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CEO | Board Director | Cell and Gene Therapy |Rare Disease Patient Advocate |Global Network | Women's Leadership
Recap from #ISCT2024 Roundtable Discussion with Donald B. Kohn and Steve Grossman “Rare Diseases and Patient Access – The Mission and The Challenges”. Top 3 Takeaways: 1. A global repository for data ,gained through research and clinical trials that are not advancing, is ideal to ensure that efforts for rare disease research and drug development are able to be mined for gold. 2. Reclaiming an asset that is not take forward by a partner puts the follow-up burden back on the original IP holder as they seek to partner and further finance trials. 3. Could re-insurance be a solution for broader access of rare disease therapies?
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If you look at the numbers, the chance that someone has a rare or specialty disease isn’t necessarily “rare” or “special.” The harsh truth is that it can take years for patients to receive a diagnosis, and even when they have one, there can be a lag time in medical claims data and years before pharma companies can accurately understand patient populations. With that comes a mind-boggling statistic: Approximately 90% of rare diseases are currently without an FDA-approved therapy. Patients are often left to navigate the path forward on their own and don’t always have clarity in knowing if new therapies come to market or if there are clinical trials that they can participate in. The system is broken, everyone knows it. Let's work together to find solutions that can accelerate the development of treatments and therapies for those who need them most. Learn more: https://hubs.li/Q02x7c9_0 #raredisease #rarediseasediagnosis #rarediseasetreatment #rarediseasetherapies
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Ambit's mission is to help rare disease patients get on life saving therapy sooner. We're seeing an average reduction of 100 days to diagnosis for clients who are leveraging our Patient Activate platform! When our Ambit Guides are employed, clients experience a 50% reduction in dropout rates of eligible patients. For one of our clients, we had a 6x greater than expected yield on consented/qualified patients to pass to their patient services team. Maybe you're not a numbers person. Read the testimonials from patients, caregivers, and HCPs in the link below. #raredisease
If you look at the numbers, the chance that someone has a rare or specialty disease isn’t necessarily “rare” or “special.” The harsh truth is that it can take years for patients to receive a diagnosis, and even when they have one, there can be a lag time in medical claims data and years before pharma companies can accurately understand patient populations. With that comes a mind-boggling statistic: Approximately 90% of rare diseases are currently without an FDA-approved therapy. Patients are often left to navigate the path forward on their own and don’t always have clarity in knowing if new therapies come to market or if there are clinical trials that they can participate in. The system is broken, everyone knows it. Let's work together to find solutions that can accelerate the development of treatments and therapies for those who need them most. Learn more: https://hubs.li/Q02x7c9_0 #raredisease #rarediseasediagnosis #rarediseasetreatment #rarediseasetherapies
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