NORD

The New York Center for Rare Diseases at Montefiore to Partner with GeneDx, PacBio and Google Health to Increase Genomic Testing Options for Bronx Families

Retrieved on: 
Wednesday, November 8, 2023

BRONX, N.Y., Nov. 8, 2023 /PRNewswire/ -- The New York Center for Rare Diseases (NYCRD) at Montefiore, recognized as a Center of Excellence by the National Organization for Rare Disorders (NORD), is partnering with GeneDx, PacBio and Google Health to deliver genetic diagnoses for Bronx families living with rare diseases. The goal of the new partnership is to help identify the genetic causes of, and best treatments for rare diseases that have remained undiagnosed, despite using today's most advanced tests.

Key Points: 
  • On average, the search for a rare disease diagnosis takes five to seven years and can be fraught with misdiagnoses.
  • The focus of this research project on the Bronx in New York City adds a level of complexity to rare disease diagnostics.
  • "Our aim is to illuminate rare disease mysteries and bring answers and hope to families navigating the complexities of a rare disease."
  • Together with PacBio and Montefiore, we can help improve equity in genomics resources and help end long diagnostic odysseys for patients."

National Organization for Rare Disorders Launches Education Series to Advance Patient Involvement in Rare Disease Drug Development

Retrieved on: 
Monday, October 16, 2023

WASHINGTON, Oct. 16, 2023 /PRNewswire/ -- Today, the National Organization for Rare Disorders (NORD®) launched a new education series in English and Spanish titled, "Rare Disease Drug Development: What Patients and Advocates Need to Know," designed to help patients and patient advocacy groups understand the drug development process.

Key Points: 
  • WASHINGTON, Oct. 16, 2023 /PRNewswire/ -- Today, the National Organization for Rare Disorders (NORD®) launched a new education series in English and Spanish titled, "Rare Disease Drug Development: What Patients and Advocates Need to Know," designed to help patients and patient advocacy groups understand the drug development process.
  • New education series in English and Spanish: "Rare Disease Drug Development: What Patients and Advocates Need to Know.
  • "The goal of this educational series is to engage the rare disease community on their essential role in the drug development process and ultimately help produce more and better treatments for rare disease," said Rebecca Aune, Director of Education Programs at the National Organization for Rare Disorders.
  • The first modules, on "Drug Development Process", "Stakeholder Roles in Drug Development" and "Natural History Studies," are now available for free at learn.rarediseases.org .

NATIONAL ORGANIZATION FOR RARE DISORDERS HOSTS 2023 BREAKTHROUGH SUMMIT

Retrieved on: 
Thursday, October 12, 2023

WASHINGTON, Oct. 12, 2023 /PRNewswire/ -- 

Key Points: 
  • Join the National Organization for Rare Disorders (NORD) Oct. 15-17, 2023 in Washington for the
    Rare Diseases and Orphan Products Breakthrough Summit.
  • This event brings together rare
    tackle the most pressing issues facing America's rare disease community.
  • more than 7,000 rare diseases that impact 1 in 10 Americans.
  • From small towns to large cities, more than 30 million
    Americans have a rare disease.

Coalition to Cure Calpain 3 in Partnership with the National Organization for Rare Disorders (NORD®) Launches LGMD2A/Calpainopathy Registry

Retrieved on: 
Thursday, September 21, 2023

Additionally, the study will help identify individuals with Calpainopathy who might be willing to take part in other research studies or clinical trials.

Key Points: 
  • Additionally, the study will help identify individuals with Calpainopathy who might be willing to take part in other research studies or clinical trials.
  • While the original registry served primarily to contact Calpainopathy patients, the new registry will have the capability to collect longitudinal data by having participants periodically update their information.
  • "The LGMD2A/Calpainopathy Registry will provide a complete picture of each patient's experience with this disease," shares Dr. Jennifer Levy, C3 Scientific Director.
  • "This new study has tremendous promise as a strong partnership that engages the patient community and addresses current knowledge gaps for Calpainopathy.

National Organization for Rare Disorders Announces More Than $100,000 in Grant Funding Available for Rare Disease Research

Retrieved on: 
Tuesday, September 19, 2023

DANBURY, Conn., Sept. 19, 2023 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) announced three new grant funding opportunities related to the following rare diseases: Arteriovenous Malformation (AVM), Levy-Yeboa Syndrome (LYS), and Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS).  

Key Points: 
  • The National Organization for Rare Disorders (NORD) announces three new research opportunities for AVM, LYS, and MMIHS.
  • NORD's Research Grants Program provides seed-money grants to qualified investigators for scientific and clinical research into diseases for which there are few other sources of funding.
  • With funding by the Maxwell Family, NORD is accepting applications for one grant of up to $40,000 US, for scientific and/or clinical research studies related to Levy-Yeboa syndrome (LYS).
  • To learn more or submit to the 2023 NORD Research Grants Cycle, visit rarediseases.org/advancing-research/request-for-proposals/

THORNOVA SOLAR RAMPS MODULE MANUFACTURING IN VIETNAM

Retrieved on: 
Tuesday, July 25, 2023

FREMONT, Calif., July 25, 2023 /PRNewswire/ -- ThornovaTSolar, the U.S-based provider of bifacial TOPCon and PERC solar modules, is now manufacturing at volume in its state-of-the-art manufacturing facility in Vietnam. The company has the capacity to produce 1.5GW of modules for immediate deployment on utility-scale, commercial and residential projects in the United States. 

Key Points: 
  • New TOPCon and PERC Modules Now Shipping to U.S.
    FREMONT, Calif., July 25, 2023 /PRNewswire/ -- ThornovaTSolar, the U.S-based provider of bifacial TOPCon and PERC solar modules, is now manufacturing at volume in its state-of-the-art manufacturing facility in Vietnam.
  • "As a company, we are committed long term to the U.S. solar market and sustainability," said William Sheng, CEO of Thornova Solar.
  • Thornova TOPCon modules feature n-Type solar cells, with virtually no light-induced degradation (LID), which increases power production significantly over time.
  • A sustainability-focused company, Thornova has selected its suppliers for solar panel components carefully and  follows the SEIA Solar Supply Chain Traceability Protocol to ensure complete supply chain traceability for its modules.

AI Therapeutics Announces Appointment of Biotechnology Industry Leader David Scheer as Chairman of the Board of Directors

Retrieved on: 
Wednesday, July 12, 2023

GUILFORD, Conn., July 12, 2023 (GLOBE NEWSWIRE) -- AI Therapeutics, Inc. , a clinical-stage biopharmaceutical company developing novel therapeutics for rare diseases, announced today the appointment of David Scheer as Chairman of the Board of Directors.

Key Points: 
  • GUILFORD, Conn., July 12, 2023 (GLOBE NEWSWIRE) -- AI Therapeutics, Inc. , a clinical-stage biopharmaceutical company developing novel therapeutics for rare diseases, announced today the appointment of David Scheer as Chairman of the Board of Directors.
  • Since 1981, Mr. Scheer has provided corporate strategic and transactional advisory services to the life sciences industry as founder and President of Scheer & Company.
  • “It is with great pleasure that I welcome David Scheer as Chairman of AI Therapeutics.
  • Dr. Rothberg is a true visionary, and we are grateful for his continued involvement as a Director of the Company.”
    “It is a privilege to join the AI Therapeutics Board of Directors as Chairman,” said Mr. Scheer.

The Galactosemia Foundation and National Organization for Rare Disorders (NORD) Jointly Publish First "Voice of the Patient" Report to Help Inform the FDA and Researchers

Retrieved on: 
Thursday, July 6, 2023

WASHINGTON and ALBANY, N.Y., July 6, 2023 /PRNewswire/ -- The Galactosemia Foundation and the National Organization for Rare Disorders (NORD)® today announced they have jointly published the galactosemia community's first "Voice of the Patient" report.

Key Points: 
  • WASHINGTON and ALBANY, N.Y., July 6, 2023 /PRNewswire/ -- The Galactosemia Foundation and the National Organization for Rare Disorders (NORD)® today announced they have jointly published the galactosemia community's first "Voice of the Patient" report.
  • This report provides a comprehensive overview of patient and caregiver experiences with this rare metabolic disease, which currently has no approved treatment options.
  • The report follows a historic Externally Led Patient-Focused Drug Development (EL-PFDD) meeting hosted by the Galactosemia Foundation and NORD last September.
  • The "Voice of the Patient" report is available for download now, and a recording of the entire EL-PFDD meeting on galactosemia can be viewed here .

Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community

Retrieved on: 
Friday, June 30, 2023

Unfortunately, today's guidance threatens vital innovation for the thousands of rare diseases that lack FDA-approved therapies.

Key Points: 
  • Unfortunately, today's guidance threatens vital innovation for the thousands of rare diseases that lack FDA-approved therapies.
  • "History tells us without the right incentives, rare disease therapies are not developed, which is why the Orphan Drug Act was created 40 years ago," adds Saltonstall.
  • We will also continue to work with the Biden Administration to ensure the Inflation Reduction Act can best support people living with a rare disease," commits Saltonstall.
  • While certain aspects of today's guidance are deeply disappointing, NORD is committed to ensuring the Inflation Reduction Act helps meet the complex needs of the more than 25 million Americans living with a rare disease.

NORDICUS PARTNERS CORPORATION TAKES A SIGNIFICANT EQUITY STAKE IN MAG MILE CAPITAL, INC.

Retrieved on: 
Wednesday, June 21, 2023

In exchange, the Company issued 2,500,000 restricted shares at $1.00 per share of its common stock (the “Company Shares”) to the seller.

Key Points: 
  • In exchange, the Company issued 2,500,000 restricted shares at $1.00 per share of its common stock (the “Company Shares”) to the seller.
  • Mag Mile Capital, Inc. (“Mag Mile Capital”) is a full-service commercial real estate mortgage banking firm headquartered in Chicago with offices in the states of New York, Massachusetts, Connecticut, Florida, Texas and Nevada.
  • Its personnel have collectively raised over $9 billion in real estate financing during their combined 29 years of experience in this industry.
  • Henrik Rouf, CEO of Nordicus, said, “We believe that with Nordicus taking a significant stake in Mag Mile Capital and its AI platform, Caplogiq, it adds value to the Company’s strategy of assisting and investing in high growth technology companies throughout the US, Nordic and Scandinavian regions looking to engage Nordicus’ services and offerings”.