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FSHD Society Introduces BetterLife FSHD Platform to Revolutionize Research and Patient Engagement for Muscular Dystrophy

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New platform combines patient data with health management tools to drive breakthroughs in FSHD research and treatment.

RANDOLPH, Mass., Oct. 5, 2024 /PRNewswire-PRWeb/ — The FSHD Society has released BetterLife FSHD, a groundbreaking web-based research hub and study designed to advance the understanding of Facioscapulohumeral Muscular Dystrophy (FSHD) and improve patient outcomes. Developed in partnership with Lumiio and officially launched on August 29, 2024, BetterLife FSHD is the first and only digital platform of its kind for the FSHD community, combining a patient registry with health management tools.

“By integrating real-world patient experience data with support tools on a multi-use research platform, we hope to directly and rapidly impact therapeutic development and access,” states Amanda Hill, Senior Director of Research and Care of the FSHD Society.

Facioscapulohumeral Muscular Dystrophy (FSHD) is a hereditary muscle-weakening condition that affects approximately 1 in 8,000 individuals worldwide. This disorder is characterized by relentless, lifelong muscle degeneration, often involving the muscles of the face, shoulders, upper arms, trunk, and legs, and can result in difficulties with facial expressions, lifting objects, walking, and even basic movements. As FSHD progresses, it can lead to significant disability. The variability in symptom onset, progression, and severity makes FSHD a challenging disease to diagnose and treat effectively. This variability also underscores the need for comprehensive data collection and research to develop personalized treatment approaches.

BetterLife FSHD is set to revolutionize FSHD research by gathering comprehensive self-reported data from patients living with this highly variable disease. The platform serves dual purposes: as a patient registry that collects vital health information and patient-reported outcome measures, and as a health management tool that allows individuals to track their symptoms, access personalized resources and better manage their journey. The resulting real-world data will be invaluable for researchers, providing a clearer picture of how FSHD manifests differently among patients and identifying patterns that could lead to more accurate diagnoses and targeted therapies. Additionally, BetterLife data will help inform the decisions of payors and regulators, ultimately improving treatment access and patient care.

“The launch of BetterLife FSHD represents a clear inflection point in the FSHD community’s journey towards a cure. By integrating real-world patient experience data with support tools on a multi-use research platform, we hope to directly and rapidly impact therapeutic development and access,” states Amanda Hill, Senior Director of Research and Care of the FSHD Society.

BetterLife FSHD data will be available to the research community in early 2025 through an online request portal. By leveraging the power of patient engagement, BetterLife FSHD aims to accelerate the pace of research, support patient access, and ultimately improve care. With multiple clinical trials currently underway for potential FSHD treatments, the launch of BetterLife FSHD represents a significant step forward in the global effort to cure FSHD.

For more information about BetterLife FSHD, visit http://www.BetterLifeFSHD.org or contact BetterLife@FSHDSociety.org.

About the FSHD Society:
The FSHD Society is a leading nonprofit organization dedicated to finding treatments and a cure for Facioscapulohumeral Muscular Dystrophy. The Society supports research, advocacy, and education initiatives aimed at improving the lives of those affected by FSHD. For over 30 years, the Society has driven major advancements in research and treatment development, with the mission to end the pain, disability, and suffering of those living with FSHD.

Media Contact

Erin Saxon, FSHD Society, 781-301-6060, erin.saxon@fshdsociety.org, FSHDSociety.org

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View original content:https://www.prweb.com/releases/fshd-society-introduces-betterlife-fshd-platform-to-revolutionize-research-and-patient-engagement-for-muscular-dystrophy-302267973.html

SOURCE FSHD Society

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Israel Banned from UAE BioTech Symposium

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2 hours ago

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October 5, 2024

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Israeli BioTech companies will not be permitted at the quarterly event with Roadshows throughout the Arab Gulf States, including the United Arab Emirates, Kuwait, Qatar, Oman, Bahrain and Saudi Arabia

In parallel, UAE BioTech Symposium has been dedicated to the memory of The Rockefeller University Nobel Laureate Professor Dr. Günter Blobel, MD. PhD., Founder of The Friends of Dresden.

ABU DHABI, UAE, Oct. 5, 2024 /PRNewswire/ — “The board of AmCham Abu Dhabi mandated that Chinese and Russian companies are not allowed. As Founding Chairman of AmCham Abu Dhabi BioTech Committee & Chairman of UAE BioTech Symposium, I mandate that Israeli companies are not allowed, says Dr. Kambiz Shekdar, PhD.

Dr. Shekdar is Owner and Chairman of the quarterly UAE BioTech Symposium launching Nove 2-6, 2024 in Abu Dhabi and Dubai, UAE. Registration for UAE BioTech Symposium is hosted at AmCham Abu Dhabi. The detailed program is available at https://www.uaebiotechsymposium.com.

“I spent 8 years in the lab with Günter as my mentor. He would often talk about how his family was packed in a car, passing through Dresden escaping Nazi Germany when the fire bombing happened. I remember each time he remembered how he could read the pages of the newspaper by the light of the fire kilometers away. He donated his prize money to all three religions because he understood that peace is the fundament for achieving our human potential,” add Shekdar.

“I saw the firebombing destruction of Dresden from very near,” Blobel told The Times of Israel upon Dr. Blobel’s passing on February 18, 2018, “only a few kilometers away; for an 8 1/2-year-old, this was all very impressive. The bombing was so bright that you could read the newspaper by the red sky.”

Complete information about UAE BioTech Symposium is available at the Chairman’s personal portal at this link: https://linktr.ee/kambizshekdar

About UAE BioTech Symposium Chairman Dr. Kambiz Shekdar, PhD
From invention at The Rockefeller University to IPO at New York Stock Exchange to scale-up drug discovery for jointly owned Made-in-Abu-Dhabi IP in the U.A.E., Dr. Kambiz Shekdar is the first U.S. Biotech Abu Dhabi Golden Visa Inventor transitioning to the U.A.E.

Dr. Shekdar, PhD invented Chromovert® Technology while he was a graduate doctoral student in the laboratory of his mentor, the late Nobel laureate & King Faisal Prize winner Dr. Günter Blobel, MD, PhD. at The Rockefeller University in New York City. For more than 20 years, Dr. Shekdar has been pursuing applications of the same platform technology, now including pursuing the creation of a joint venture with Emirati stakeholders to implement the by-now validated research engine as part of a national-level public-private partnership for drug discovery at scale in the U.A.E. Dr. Shekdar is also a member of the Abu Dhabi, UAE chapter of American Chambers of Commerce where he is Founding Chairman of the AmCham Abu Dhabi BioTech Committee.

https://www.linkedin.com/in/kambiz-shekdar-51a52a34/

About UAE BioTech Symposium
UAE BioTech Symposium in partnership with the AmCham Abu Dhabi BioTech Committee and Masdar City will host quarterly panel discussions and lab tours in Abu Dhabi, Dubai and roadshow destinations throughout the GCC and Middle East. The events are free with attendance limited to prioritize U.S. and international BioTech owners and executives. Program details will be posted online in Arabic and in English as registration for each event goes live via the AmCham Abu Dhabi website.

Arabic site for scientific program: http://www.uaebiotechsymposium.ae
English site for scientific program: https://www.uaebiotechsymposium.com

About AmCham BioTech Committee
The AmCham BioTech Committee was formed to establish a BioTech sector in Abu Dhabi with a focus on promoting opportunities for U.S. BioTech companies with a vision to be a thought leader and facilitator for U.S. corporate interests in the emerging BioTech sector in Abu Dhabi and throughout the Middle East. Since its founding, the BioTech committee has seen a notable uptick in interest from U.S.-based companies seeking to broaden their service offerings within the region. AmCham BioTech Committee founding members include Seconcell Bio, Intelligenix Advanced Diagnostics, Extend Biosciences, Halia Therapeutics and Jones Lang LaSalle Inc (JLL).
https://amchamabudhabi.org/biotech/

CONTACT: Kambiz Shekdar, +971585820175

 

View original content to download multimedia:https://www.prnewswire.com/news-releases/israel-banned-from-uae-biotech-symposium-302268169.html

SOURCE Secondcell Bio, LLC; UAE BioTech Symposium

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China Matters’ Feature: Exploring New Frontiers on Urban Governance

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2 hours ago

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October 5, 2024

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HANGZHOU, China, Oct. 5, 2024 /PRNewswire/ — The Global Mayors Dialogue: Hangzhou and the 9th Hangzhou International Sister City Mayors Conference was launched on Sept 25, bringing together mayors and representatives from 24 cities across 15 countries.

The key discussions focused on urban governance and sustainable development and the integration of digital and physical spaces, coinciding with the third Global Digital Trade Expo.

Hangzhou, home to three UNESCO World Heritage sites West Lake, the Grand Canal (Hangzhou section), and the Liangzhu Archaeological Site, has rapidly expanded its international sister city network. The city boasts a strong cultural heritage, thriving digital economy, and business-friendly environment, connecting it with 31 sister cities and 42 partner cities worldwide. As the host of the event, Hangzhou aims to foster deeper global collaboration and dialogue between global cities.

In this video, Venezuelan content creator Rafael Saavedra engages with the Governor of the Region of Western Greece, the Mayor of Kota Kinabalu, and the City Manager of Cape Town. They discuss the challenges their cities face in urban governance, share insights on digitalization, and highlight the conference’s significance.

Rafael also participates in a tree-planting initiative and visits the Alibaba Xixi Campus and the Liangzhu Archaeological Site, learning about Hangzhou’s commitment to digital economic development, cultural preservation, and environmental protection.

Curious about how mayors from around the world have evaluated Hangzhou and the exchanges that took place on urban governance? Watch this video to find your answers!

 

View original content to download multimedia:https://www.prnewswire.com/news-releases/china-matters-feature-exploring-new-frontiers-on-urban-governance-302268172.html

SOURCE China Matters

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Israel Banned from UAE BioTech Symposium

Published

5 hours ago

on

October 5, 2024

By

Israeli BioTech Companies will not be permitted at the quarterly event with Roadshows throughout the Arab Gulf States, including the United Arab Emirates, Kuwait, Qatar, Oman, Bahrain and Saudi Arabia

In parallel, UAE BioTech Symposium has been dedicated to the memory of The Rockefeller University Nobel Laureate Professor Dr. Günter Blobel, MD. PhD., Founder of The Friends of Dresden.

ABU DHABI, UAE, Oct. 5, 2024 /PRNewswire/ — “The board of AmCham Abu Dhabi mandated that Chinese and Russian companies are not allowed. As Founding Chairman of AmCham Abu Dhabi BioTech Committee & Chairman of UAE BioTech Symposium, I mandate that Israeli companies are not allowed, says Dr. Kambiz Shekdar, PhD.

Dr. Shekdar is Owner and Chairman of the quarterly UAE BioTech Symposium launching Nove 2-6, 2024 in Abu Dhabi and Dubai, UAE. Registration for UAE BioTech Symposium is hosted at AmCham Abu Dhabi. The detailed program is available at https://www.uaebiotechsymposium.com.

“I spent 8 years in the lab with Günter as my mentor. He would often talk about how his family was packed in a car, passing through Dresden escaping Nazi German when the fire bombing happened. I remember each time he remembered how he could read the pages of the newspaper by the light of the fire kilometers away. He donated his prize money to all three religions because he understood that peace is the fundament for achieving our human potential,” add Shekdar.

“I saw the firebombing destruction of Dresden from very near,” Blobel told The Times of Israel upon Dr. Blobel’s passing on February 18, 2018, “only a few kilometers away; for an 8 1/2-year-old, this was all very impressive. The bombing was so bright that you could read the newspaper by the red sky.”

Complete information about UAE BioTech Symposium is available at the Chairman’s personal portal at this link: https://linktr.ee/kambizshekdar 

About UAE BioTech Symposium Chairman Dr. Kambiz Shekdar, PhD
From invention at The Rockefeller University to IPO at New York Stock Exchange to scale-up drug discovery for jointly owned Made-in-Abu-Dhabi IP in the U.A.E., Dr. Kambiz Shekdar is the first U.S. Biotech Abu Dhabi Golden Visa Inventor transitioning to the U.A.E.

Dr. Shekdar, PhD invented Chromovert® Technology while he was a graduate doctoral student in the laboratory of his mentor, the late Nobel laureate & King Faisal Prize winner Dr. Günter Blobel, MD, PhD. at The Rockefeller University in New York City. For more than 20 years, Dr. Shekdar has been pursuing applications of the same platform technology, now including pursuing the creation of a joint venture with Emirati stakeholders to implement the by-now validated research engine as part of a national-level public-private partnership for drug discovery at scale in the U.A.E. Dr. Shekdar is also a member of the Abu Dhabi, UAE chapter of American Chambers of Commerce where he is Founding Chairman of the AmCham Abu Dhabi BioTech Committee.

https://www.linkedin.com/in/kambiz-shekdar-51a52a34/

About UAE BioTech Symposium
UAE BioTech Symposium in partnership with the AmCham Abu Dhabi BioTech Committee and Masdar City will host quarterly panel discussions and lab tours in Abu Dhabi, Dubai and roadshow destinations throughout the GCC and Middle East. The events are free with attendance limited to prioritize U.S. and international BioTech owners and executives. Program details will be posted online in Arabic and in English as registration for each event goes live via the AmCham Abu Dhabi website.

Arabic site for scientific program: http://www.uaebiotechsymposium.ae
English site for scientific program: https://www.uaebiotechsymposium.com

About AmCham BioTech Committee
The AmCham BioTech Committee was formed to establish a BioTech sector in Abu Dhabi with a focus on promoting opportunities for U.S. BioTech companies with a vision to be a thought leader and facilitator for U.S. corporate interests in the emerging BioTech sector in Abu Dhabi and throughout the Middle East. Since its founding, the BioTech committee has seen a notable uptick in interest from U.S.-based companies seeking to broaden their service offerings within the region. AmCham BioTech Committee founding members include Seconcell Bio, Intelligenix Advanced Diagnostics, Extend Biosciences, Halia Therapeutics and Jones Lang LaSalle Inc (JLL).
https://amchamabudhabi.org/biotech/

CONTACT: Kambiz Shekdar, +971585820175

View original content to download multimedia:https://www.prnewswire.com/news-releases/israel-banned-from-uae-biotech-symposium-302268169.html

SOURCE Secondcell Bio, LLC; UAE BioTech Symposium

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