GLOBAL GENES


Associated tags: Knowledge, Disease, Love, Diagnosis, Global Genes, Gene, Patient, Research, Pharmaceutical industry, Health, Genetics, Degenerative disease, Caregiver, Science, Medical device, Other Health

Locations: PENNSYLVANIA, PHILADELPHIA, SEOUL, CALIFORNIA, RARE

Rare Disease Advocates Learn to Accelerate Therapeutic Development at 9th RARE Drug Development Symposium

Retrieved on: 
Thursday, March 14, 2024
Research, Organization, NCATS, Global Genes, Learning, Disease, Science, Caregiver, University, Patient, Knowledge, Data collection, Drug development, Division, Amgen, Food, Pharmaceutical industry

ALISO VIEJO, Calif., March 14, 2024 /PRNewswire-PRWeb/ -- The rare disease patient advocacy organization Global Genes and the Orphan Disease Center at the University of Pennsylvania will host the 9th Annual RARE Drug Development Symposium, an event that provides patient advocates with the knowledge, skills, and connections they need to advance therapeutic development for their communities.

Key Points: 
  • ALISO VIEJO, Calif., March 14, 2024 /PRNewswire-PRWeb/ -- The rare disease patient advocacy organization Global Genes and the Orphan Disease Center at the University of Pennsylvania will host the 9th Annual RARE Drug Development Symposium, an event that provides patient advocates with the knowledge, skills, and connections they need to advance therapeutic development for their communities.
  • "Since Global Genes and the Orphan Disease Center launched the RARE Drug Development Symposium nine years ago, patient advocates have emerged as critical catalysts and drivers of therapeutic development," said Charlene Son Rigby, CEO of Global Genes.
  • Sponsors for this year's RARE Drug Development Symposium include Alexion , Amgen , Amicus Therapeutics , BioCryst , BridgeBio , Ovid Therapeutics , and Sanofi Genzyme .
  • "Rare disease patient communities are active participants in the drug development process," said Monique Molloy, Executive Director, Orphan Disease Center at the University of Pennsylvania.

Global Genes Heads to Washington D.C. for Rare Disease Day Events

Retrieved on: 
Wednesday, February 28, 2024
Rare disease, Bangladesh Technical Education Board, Social media, Caregiver, NIH, Physician, DSM-IV codes, Prevalence, Human, Eisenhower Executive Office Building, Patient, Policy, Coffee, Family, Disease, Statistics, Diagnosis, Global Genes, Research, Pharmaceutical industry

ALISO VIEJO, Calif., Feb. 28, 2024 /PRNewswire-PRWeb/ -- Charlene Son Rigby, CEO of the rare disease patient advocacy organization Global Genes, will serve on a policy panel at the White House Rare Disease Forum as part of a week-long series of events the organization will be participating in the nation's capital leading up to World Rare Disease Day.

Key Points: 
  • ALISO VIEJO, Calif., Feb. 28, 2024 /PRNewswire-PRWeb/ -- Charlene Son Rigby, CEO of the rare disease patient advocacy organization Global Genes, will serve on a policy panel at the White House Rare Disease Forum as part of a week-long series of events the organization will be participating in the nation's capital leading up to World Rare Disease Day.
  • Rare Disease Week, held each year on the last week of February, culminates in World Rare Disease Day, which is held on the last day of February.
  • In addition to the White House Rare Disease Forum, representatives from Global Genes will be joining the Rare Disease Legislative Advocates, a program of the Everylife Foundation for Rare Diseases, for its annual Rare Disease Week on Capitol Hill for a series of meetings between rare disease advocates and lawmakers.
  • Rare disease community members unable to attend Rare Disease Week can still participate by sharing their own zebra tale.

RARE-X Launches Pompe Consortium to Support Patient-Owned Data Collection and Aggregated Data Sharing with Patient Community, Biopharma and Research Collaborators

Retrieved on: 
Wednesday, December 6, 2023
Marshall Mountains, Research, Food, Organization, Disease, Sanofi, Patient, Global Genes, Heart, Data collection, Health, Caregiver, Diagnosis, Glycogen storage disease, Gene, Enzyme replacement therapy, Cell, Pharmaceutical industry, Pompe

ALISO VIEJO, Calif., Dec. 6, 2023 /PRNewswire-PRWeb/ -- RARE-X, Global Genes' research program and data-sharing platform, today announced the launch of The Pompe Consortium. The Pompe Consortium is a group representing a cross section of participants from the rare disease ecosystem, including individuals with rare diseases, advocacy organizations, biopharmaceutical companies, and academic researchers. The consortium will provide steering for a collaboration with RARE-X which is designed to enable improved Pompe disease ecosystem health by pooling the high-quality data needed to develop new knowledge that advances understanding, research and development of therapies in support of people living with Pompe disease.

Key Points: 
  • Global Genes' research program, RARE-X, launches Pompe Consortium, gathering together individuals with rare diseases, advocacy organizations, biopharmaceutical companies, and academic researchers, to support patient-owned data collection and aggregated data sharing with patient community, biopharma and research collaborators.
  • ALISO VIEJO, Calif., Dec. 6, 2023 /PRNewswire-PRWeb/ -- RARE-X, Global Genes' research program and data-sharing platform, today announced the launch of The Pompe Consortium.
  • The Pompe Consortium is the second consortium RARE-X has launched with both industry and advocacy collaborators.
  • The Pompe Consortium includes the participation of biopharmaceutical companies and patient advocacy organizations, as well as academic researchers.

Global Genes and the Rare Disease Diversity Coalition Expand Effort to Accelerate Diagnosis of Rare Disease in Underserved Communities

Retrieved on: 
Thursday, October 19, 2023
Genetic counseling, DSM-IV codes, Genetic testing, Health, Rare, AL, Rare disease, Navigation, Gene, Community, Personal Genetics Education Project, Quality of life, Disease, Caregiver, Partnership, Your Family Tree, Teaching, Global Genes, Patient, Black Women's Health Imperative, Nursing, Medical device, Vaccine, Delays, Diagnosis

ALISO VIEJO, Calif., Oct. 19, 2023 /PRNewswire-PRWeb/ -- Global Genes, a leading rare disease patient advocacy organization, and the Rare Disease Diversity Coalition (RDDC) today launches the second phase of their Know Your Family History initiative, which promotes more accurate, timely, and inclusive diagnoses within underserved communities.

Key Points: 
  • ALISO VIEJO, Calif., Oct. 19, 2023 /PRNewswire-PRWeb/ -- Global Genes, a leading rare disease patient advocacy organization, and the Rare Disease Diversity Coalition (RDDC) today launches the second phase of their Know Your Family History initiative, which promotes more accurate, timely, and inclusive diagnoses within underserved communities.
  • "By working with community health workers who are embedded in the communities they serve, this initiative will go a long way in increasing awareness of rare diseases at the grassroots level and help accelerate the path to a diagnosis and treatment."
  • - Shruti Mitkus, Global Genes
    Know Your Family History is part of a multifaceted partnership between Global Genes and the RDDC.
  • RDDC was launched by Black Women's Health Imperative to address the challenges faced by underserved populations with rare diseases and to reduce health disparities.

Global Genes' RARE-X Names Winners to the Xcelerate RARE Open Science Data Challenge

Retrieved on: 
Wednesday, September 20, 2023
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SAN DIEGO, Sept. 20, 2023 /PRNewswire-PRWeb/ -- The rare patient advocacy organization Global Genes today announced the winners of its inaugural Xcelerate RARE Challenge Open Science Data Challenge at the RARE Advocacy Summit in San Diego.

Key Points: 
  • Global Genes today announced the winners of its inaugural Xcelerate RARE Challenge Open Science Data Challenge at the RARE Advocacy Summit in San Diego.
  • The Xcelerate RARE Challenge brought together academic and industry researchers and data scientists to use patient-reported data for rare pediatric neurodevelopmental diseases to address unanswered research questions about rare diseases.
  • SAN DIEGO, Sept. 20, 2023 /PRNewswire-PRWeb/ -- The rare patient advocacy organization Global Genes today announced the winners of its inaugural Xcelerate RARE Challenge Open Science Data Challenge at the RARE Advocacy Summit in San Diego.
  • The Xcelerate RARE Challenge, which was focused on rare pediatric neurodevelopmental diseases, brought together academic and industry researchers and data scientists to use patient-reported data to address unanswered research questions about rare diseases.

Rare Disease Patient Advocates Gather in San Diego for a Week of Events to Connect, Learn, and Empower

Retrieved on: 
Tuesday, June 27, 2023
Week, Research, Organization, Sustainability, Patient, Gene, Community building, Global Genes, Community Building, Caregiver, Disease, Airline, Pharmaceutical industry

ALISO VEIJO, Calif., June 27, 2023 /PRNewswire-PRWeb/ -- Members of the rare disease community from around the world will gather in San Diego in September for Global Genes' Week in RARE, a set of events for patient advocates to network, learn, and inspire each other.

Key Points: 
  • This will be a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.
  • ALISO VEIJO, Calif., June 27, 2023 /PRNewswire-PRWeb/ -- Members of the rare disease community from around the world will gather in San Diego in September for Global Genes' Week in RARE, a set of events for patient advocates to network, learn, and inspire each other.
  • Week in RARE includes the RARE Health Equity Forum , the RARE Advocacy Summit , the RARE Champions of Hope Awards , and meetings for Global Genes' Global Advocacy Alliance and its RARE Corporate Alliance.
  • The RARE Advocacy Summit (formerly known as the RARE Patient Advocacy Summit), one of the world's largest gatherings for the rare disease community, runs September 19 through 21.

Global Genes' RARE-X Issues Open Call to Researchers to Participate in the Inaugural Xcelerate RARE Challenge

Retrieved on: 
Wednesday, May 31, 2023
Sage Bionetworks, Roche, Quality of life, Xcelerator, Research, Scientific programming language, Global Genes, Patient, CACNA1A, Machine learning, Algorithm, RTW, Challenge, RARE, Disease, Pharmaceutical industry

ALISO VIEJO, Calif., May 31, 2023 /PRNewswire-PRWeb/ -- Global Genes today announced an open call to researchers interested in participating in its inaugural Xcelerate RARE Challenge, a rare disease open science challenge focused on rare pediatric neurodevelopmental diseases.

Key Points: 
  • ALISO VIEJO, Calif., May 31, 2023 /PRNewswire-PRWeb/ -- Global Genes today announced an open call to researchers interested in participating in its inaugural Xcelerate RARE Challenge, a rare disease open science challenge focused on rare pediatric neurodevelopmental diseases.
  • The Xcelerate RARE Challenge brings together academic and biopharmaceutical industry researchers and data scientists to use patient reported data to address unanswered research questions about rare diseases.
  • "With this Xcelerate RARE Challenge, our goal is to advance rare disease understanding and meaningful therapeutic research for rare diseases through open sharing of robust data, and collaboration."
  • Without the generosity and unwavering support of the sponsors and partners, the Xcelerate RARE Challenge would not have been possible.

Sleep Consortium Launches Sleep Patient Data Collection Initiative to Accelerate Therapeutic Development

Retrieved on: 
Tuesday, May 23, 2023
Consortium, Kleine–Levin syndrome, SC, Narcolepsy, Data collection, Research, Children's Hospital, Patient, Chairperson, Somnolence, Neurology, Jazz Pharmaceuticals, Hospital, Idiopathic hypersomnia, Phenotype, Developmental Medicine & Child Neurology, Global Genes, Disease, Pharmaceutical industry, Sleep, Child

"The Sleep Consortium takes a bold new approach to sleep research putting the patient in the center of its efforts. This initiative demands that the patient be the driver of new research considerations, have ownership of their own data, and serve as an invaluable partner to researchers internationally. This novel approach will leverage advanced technologies to further our understanding of sleep-wake disorders by starting with the debilitating symptom of excessive daytime sleepiness and identifying all the faces of patients who are suffering from it to better define the roads that lead to the development, consequence, and association with excessive daytime sleepiness." --- Anne Marie Morse, Director of Child Neurology and Pediatric Sleep Medicine, Geisinger, Janet Weis Children's Hospital and Sleep Consortium Scientific Advisor.

Key Points: 
  • Sleep Consortium and RARE-X, the Global Genes research program and patient-owned data collection platform, to collaborate on the Sleep Data Collection Initiative to accelerate the development of effective treatments for central disorders of hypersomnolence (CDoH) and related conditions.
  • ALISO VIEJO, Calif., May 23, 2023 /PRNewswire-PRWeb/ -- Sleep Consortium (SC) and RARE-X, the Global Genes research program and patient-owned data collection platform, today announced a collaboration to launch the Sleep Data Collection Initiative aimed at accelerating the development of effective treatments for central disorders of hypersomnolence (CDoH) and related conditions.
  • Phase 1 of the Sleep Data Collection Initiative has four main objectives: bring together a multi-disciplinary workgroup to prioritize sleep domains, develop an expanded sleep-focused data model, create a sleep patient community data collection portal, and the publication of a white paper detailing Phase 1 outcomes.
  • "We are thrilled to be partnering with the Sleep Consortium on this patient-centered initiative that promises to accelerate therapeutic development for central disorders of hypersomnolence.

Global Genes announces partnership with CureJM Foundation to expand support in rare disease community for mental health related challenges

Retrieved on: 
Thursday, May 11, 2023
Partnership, Depression, Anxiety, Mental health, Cure, Mental, Organization, Global Genes, Patient, Research, Health, Disease, Nursing

ALISO VIEJO, Calif., May 11, 2023 /PRNewswire-PRWeb/ -- The rare disease patient advocacy organization Global Genes has partnered with Cure JM Foundation to work together on a two-year mental health initiative.

Key Points: 
  • The rare disease patient advocacy organization Global Genes has partnered with Cure JM Foundation to work together on a two-year mental health initiative.
  • ALISO VIEJO, Calif., May 11, 2023 /PRNewswire-PRWeb/ -- The rare disease patient advocacy organization Global Genes has partnered with Cure JM Foundation to work together on a two-year mental health initiative.
  • Global Genes is committed to improving the health and mental well-being of the rare disease community that it serves.
  • "Mental health is an often-neglected aspect of living with a rare disease," said Charlene Son Rigby, CEO of Global Genes.

Global Genes Announces Completion of RARE-X Merger and Strategic Direction for Combined Organization

Retrieved on: 
Tuesday, February 7, 2023
Organization, Caregiver, Health equity, Rare disease, Kansas City metropolitan area, Diagnosis, Travel, Global Genes, Patient, Ecosystem, Research, Genetic counseling, Disease, Education, Learning, Drug discovery, Gene, Medical device, Pharmaceutical industry, Nursing

ALISO VIEJO, Calif., Feb. 7, 2023 /PRNewswire-PRWeb/ -- The rare disease patient advocacy organization Global Genes today announced it has completed its merger with the nonprofit data-sharing platform RARE-X and unveiled a three-pronged strategy for the combined organization that focuses on providing tools, connections, and opportunities to meet the needs of next-generation advocacy.

Key Points: 
  • Son Rigby said going forward, Global Genes is organizing its work around three pillars: support for patients and developing communities, educational tools, and research enablement.
  • Global Genes has a rich history of providing education and information through its toolkits, events, webinars, podcasts, and videos.
  • To help patients better address mental health issues, Global Genes is working to connect people with the most appropriate resources faster.
  • To support diversity in research, Global Genes is launching two pilot programs with partners in the Kansas City and Alabama regions.