Clinigen’s Post

Horizon has picked up another garland on its pre-takeover victory lap. Months after broad patient groups named Horizon the most trustworthy #pharmaceutical business in the United States, rare diseases organizations gave the company the same honor in a study specific to #orphandrugs. Both ranks were produced by patient view. The #company received opinions from 426 patient groups for rare diseases for its most recent listing. Roche was knocked off the top spot this year by Horizon, which was previously placed third among rare disease patient groups #familiar with the firm. Takeda, a new face on the winner’s podium, came in third while Roche dropped to second. For more info:https://bit.ly/3QV3EfG #raredisease #RareDiseaseAdvocate #rarediseaseresearch #orphandrugs #RareImpact  #healthcare #prophecymarketinsights

A survey by PatientView found that 57% of patient advocates believe the pharma industry's reputation is "good" or "excellent" for rare disease drug research. The top three companies are Horizon, Roche, and Takeda, with Roche, Takeda, and Pfizer in the top three among the largest pharma groups. The most progress with rare disease patients was made by UCB and AstraZeneca and Octapharma. The survey also revealed that 63% of rare disease groups rated the industry well on products that benefit patients, 58% agreed they excel at innovation, 56% said patient safety, and 55% chose patient-group relations as "good" or "excellent." https://lnkd.in/gbEj_rV4 #rarediseaseawareness #patientcentricity #rarediseaseresearch #patientoutcomes

In case you missed it, we released a special podcast episode in honor of Rare Disease Day. Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD), discussed opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights included the importance of: - continued support for the development of rare disease treatments - making a push towards more equitable clinical trial populations - focusing on how we can reduce the barriers to access - bringing in the patient perspective and patient voice in every step of the drug development process Listen to the episode at #rarediseases #raredisorders #patientengagement #patientadvocacy #RareDiseaseDay #WeAreRare

In case you missed it, we released a special podcast episode in honor of Rare Disease Day. Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD), discussed opportunities for pharmaceutical companies to work with and support rare disease communities. Discussion highlights included the importance of: - continued support for the development of rare disease treatments - making a push towards more equitable clinical trial populations - focusing on how we can reduce the barriers to access - bringing in the patient perspective and patient voice in every step of the drug development process Listen to the episode at #rarediseases #raredisorders #patientengagement #patientadvocacy #RareDiseaseDay #WeAreRare

𝟐 𝐖𝐄𝐄𝐊𝐒 𝐓𝐎 𝐆𝐎 until Europe's most exciting orphan drug event 🧬 Our expert team is here to address any unique challenges you might be facing regarding pricing and market access for #rarediseases and #orphandrugs. Our goal is to help you save precious time and resources, all while advocating for a brighter future for rare disease patients in Europe. 🤝 𝐒𝐞𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫 𝐦𝐞𝐞𝐭𝐢𝐧𝐠 𝐰𝐢𝐭𝐡 𝐮𝐬 𝐯𝐢𝐚 𝐒𝐰𝐚𝐩𝐂𝐚𝐫𝐝 or reach out to us at [email protected]. #marketaccess #patientaccess #healthcare #pharmaceuticals #globalconference #WODC2023 World Orphan Drug Congress Europe

Oliver Wyman's Health and Life Sciences Francois Lucas and Marc Tomassi identify four areas that pharmaceutical companies must examine to sustain attractive rare disease pricing and market access in this article > https://owy.mn/4buhsp1 #RareDiseases #OWHealth #Pharma

The average annual cost of treating a rare disease patient in the US is $32,000, with some cases exceeding $100,000. Treating rare diseases is challenging due to limited markets and high costs resulting from research and development investments. To address these issues, the industry is adopting a more sustainable approach driven by payer scrutiny and budget considerations. Pharmaceutical companies should employ these key strategies to maintain pricing and market access for rare disease therapies > https://owy.mn/4buhsp1 #OWHealth #RareDisease #Pharma

One in 17 people is affected by a #raredisease in Europe. With up to 8,000 identified rare conditions, diagnosis (and misdiagnosis) are all too common. As we advance support for sites and foster greater connections from medical to commercial, we will make faster leaps forward in rare disease research and education. https://bit.ly/49VAWBN #RareDiseaseDay European Pharmaceutical Manufacturer