Alkermes’ Post

Interested in learning about data sharing practices within the rare disease landscape? Join the Connect session: "Rare Diseases Community of Interest: advancing data sharing practices in the field." Seven speakers will discuss this topic from various angles, including clinical, patient, and translational research perspectives. Register: https://bit.ly/3PV30xy

Multifaceted mitochondria will bring together scientists working on all aspects of mitochondria, from basic bioenergetics all the way to disease. Submit your abstract before June 21 for a chance to present your research at our symposium in October. https://hubs.li/Q02B3QkW0

Very much looking forward to joining this conversation about the challenges and opportunities of data sharing in the world of rare conditions. #rarechromosomedisorders

Ever wonder what we do here at the Jacobs Institute? Dr. Adnan Siddiqui, MD, PhD, Jacobs Institute CEO and CMO, shares some insight into the innovations taking place at the JI, as well as the benefits in partnering with the JI to further advance the field of vascular disease and neurologic diseases. To learn more, check out the link in our bio or ask a question below!

Missed our Science Matters seminar with Dr. Anna Lindstrand from Karolinska Institutet? No worries! The recording is now available on PNRI's YouTube channel. Dive into advancements in multiomics diagnostics for rare diseases, focusing on neurodevelopmental disorders and intellectual disabilities. Watch now https://lnkd.in/dWY7YUkG #sciencematters #multiomics #geneticresearch #genomesequencing #rarediseasediagnosis #rarediseaseresearch

JPND pre-announcement of a Joint Transnational Call (JTC) due to be launched in January 2025 for research proposals on 'Health and social care research with a focus on the moderate and late stages of neurodegenerative diseases'. Find out more: Check out the JPND website for latest info ➡️ https://bit.ly/405o2On Full details of the call are available on the HRB website➡️ https://bit.ly/41DbuQz @JPNDeurope

April is Parkinson's Awareness Month! 🤍 This special month aims to raise awareness on #ParkinsonsDisease and recognize its symptoms or early signs that can lead to an earlier diagnosis and overall better quality of life! Start learning more about Parkinson's Disease this month to spread the word and advance PD research. Check out our currently open Parkinson's clinical trials conducted by our Principal Investigators, Dr. Anna Morenkova and Dr. Nicolas Phielipp: https://bit.ly/3MDKIiG

The research world is fast learning something which the patient community has known for a very long time: that there is real insight to be found in the anecdotal information exchanged between individuals and families affected by rare diseases. But in recent years, research colleagues have taken this a step further by implementing a methodology that allows them to understand patient preferences for treatment more objectively. Cecilia Jimenez-Moreno, one of the senior Research Associates at Kielo Research, explains what patient preferences are and their unique value in rare disease research. Read here: https://lnkd.in/eXQ6iNcM #Mitochondria #MitochondrialDisorders #RareDisease

Many rare diseases remain understudied, with limited research foundations. Two years ago, the Rare Disease Moonshot was launched (with EATRIS as a partner) to address these challenges through groundbreaking public-private collaboration to shift from siloed approaches to more collaborative, interconnected research methods to tackle these knowledge gaps. To mark its second anniversary, a Euronews debate took place to explore the progress made, the challenges ahead, and the systemic changes required to create a lasting impact. 📝 A report is now available about the debate here: https://lnkd.in/dxUp33GN 👇 Watch the recap vid of the debate below.