MOGAD

Caregivers Cheer First Patients at New Intermountain Primary Children’s Hospital, Miller Family Campus in Lehi, Utah

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星期一, 二月 12, 2024
Intermountain West, MOGAD, Liver, Child, Central nervous system, Ulcerative colitis, Caregiver, Gymnastics, Intermountain Health, Courage, Friends, Basketball, Hospital, Primary sclerosing cholangitis, Hope, Communication, Bile, Arthralgia, University, Life flight, Nursing, Patient, Myasthenia gravis, Optic nerve, Biology, Intermountain, Football, Environment

The Miller Family Campus’ Infusion Center opened for one day before the grand opening to give them the treatments they needed, closer to home.

Key Points: 
  • The Miller Family Campus’ Infusion Center opened for one day before the grand opening to give them the treatments they needed, closer to home.
  • Everyone at the new campus has been so amazing to work with!”
    The new Miller Family Campus is a full-service children’s hospital providing nearly all the same specialty pediatric services that patients receive at the Salt Lake Campus.
  • The Miller Family Campus is part of Intermountain Health’s Primary Promise to build the nation’s model health system for children.
  • For more information about the new Miller Family Campus in Lehi, visit primarychildrens.org/lehi .

ECTRIMS to Host Global Patient-Community Event in Milan, Italy

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星期二, 十月 3, 2023
Health, Other Consumer, Consumer, Other Health, Managed Care, Pharmaceutical, Biotechnology, Human, NMOSD, Research, Multiple sclerosis, Person, MS, MOGAD, Allianz, Patient, Treatment, Online shopping

The European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) will host MSMilan Patient Community Day on Saturday 14 October 2023, 15:00–17:00 CEST, at the Allianz MiCo Centre in Milan, Italy.

Key Points: 
  • The European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) will host MSMilan Patient Community Day on Saturday 14 October 2023, 15:00–17:00 CEST, at the Allianz MiCo Centre in Milan, Italy.
  • “We hope this event empowers those living with this and other related conditions to be better informed about decision making affecting their treatment and care options”.
  • Participation is free of charge, but pre-registration is required at this link ( https://ectrims.eu/msmilan2023-msmilan-patient-community-day/ ) on the ECTRIMS MSMilan 2023 website.
  • The event will be live streamed in English on ECTRIMS website ( https://ectrims.eu/msmilan2023-msmilan-patient-community-day/ ), with translation offered in Italian, German, French, Spanish, and Portuguese.

The MOG Project, Pediatric Neurologist Secure CDC Approval to Adopt ICD-10 Code for Rare Disease MOGAD

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星期一, 十月 2, 2023
Insurance, Optic neuritis, General assembly, Disease, United Nations, Glycoprotein, CHLA, Neuroimmunology, ICD, Lou Ruvo Center for Brain Health, Knowledge Organization (journal), United Nations General Assembly, Centers for Disease Control and Prevention, Research, Brain, Children's Hospital, Multiple sclerosis, CDC, MOGAD, MD, Patient, Physician, Children's Hospital Los Angeles, Immune system, Optic nerve, Stockholm Environment Institute US Center, Transverse myelitis, Diagnosis, Knowledge, Neuromyelitis optica spectrum disorder, Barrow Neurological Institute, International Classification of Diseases, Video game–related health problems, FDA, Acute disseminated encephalomyelitis, WHO, World Health Organization, Medical device

OLNEY, Md., Oct. 2, 2023 /PRNewswire-PRWeb/ -- The MOG Project, a nonprofit organization committed to supporting the research and treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) announced that its Executive Director Julia Lefelar, with support from The MOG Project Executive Board and Children's Hospital Los Angeles (CHLA) Pediatric Neurologist Jonathan Santoro, MD, secured approval to have the US Centers for Disease Control and Prevention (CDC) create an ICD-10 code for MOGAD. As of October 1, 2023, an official code for MOGAD is included in the 10th edition of the International Classification of Diseases (ICD) and Related Health Problems, which is relied upon by physicians and insurance providers to classify diagnoses and advise treatment.

Key Points: 
  • Without a CDC code, MOGAD patients had previously been grouped in with patients with similar diseases like neuromyelitis optica spectrum disorder, optic neuritis, acute disseminated encephalomyelitis, transverse myelitis and even multiple sclerosis.
  • "For the MOGAD community, this CDC code is more than a win for better health outcomes and fewer insurance delays, it gives our rare disease an identity and legitimizes it."
  • "The addition of a MOGAD specific ICD-10 code allows patients to better access the therapies that they need to treat their disease," said Santoro.
  • "Further, it allows for disease monitoring across the country, which will increase knowledge and research on this rare neuroimmunology disorder."

Horizon Therapeutics Chairman, President and CEO Tim Walbert Named the First Recipient of the Global Rare Trailblazer Award by The Sumaira Foundation

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星期三, 六月 14, 2023
Autoimmunity, Horizon Therapeutics, Quality of life, Lou Ruvo Center for Brain Health, Research, NMOSD, Multimedia, Science, MOGAD, UCB, Walbert, Patient, TSF, Autoimmune disease, EMBARC, Neuromyelitis optica spectrum disorder, Empathy, Rare, Caregiver, Disease, Award, Inflammation, Pharmaceutical industry, Rocky Mountains, Genentech

BOSTON, June 14, 2023 /PRNewswire/ -- The Sumaira Foundation (TSF), a global patient advocacy organization focused on rare neuroimmune conditions, is delighted to announce Tim Walbert, chairman, president and chief executive officer of Horizon Therapeutics, as TSF's Inaugural Global Rare Trailblazer Award recipient.

Key Points: 
  • BOSTON, June 14, 2023 /PRNewswire/ -- The Sumaira Foundation (TSF), a global patient advocacy organization focused on rare neuroimmune conditions, is delighted to announce Tim Walbert, chairman, president and chief executive officer of Horizon Therapeutics, as TSF's Inaugural Global Rare Trailblazer Award recipient.
  • Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases.
  • Walbert joined Horizon in 2008 as president and chief executive officer and has served as chairman of the company's board of directors since 2010.
  • We couldn't think of a better person to receive TSF's Global Rare Trailblazer Award, nor of a better occasion than our Annual Gala to present the Award."

The SPHERES Registry for NMOSD Patients Launches Precision Medicine Program

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星期四, 五月 4, 2023
David Geffen School of Medicine at UCLA, Registry, NMO, Spinal cord, Personalized medicine, Quality of life, Research, Neuromyelitis optica spectrum disorder, Brain, Experiment, MOGAD, Paralysis, Synergy, SPHERES, Patient, Collection, Data, Paratriathlon, UCLA, Phenotype, Disease, Autoimmunity, Safety, Inflammation, Pharmaceutical industry, Vaccine, Medicine, NMOSD

SPHERES Registry now accelerates precision medicine research to optimize treatment efficacy and safety.

Key Points: 
  • SPHERES Registry now accelerates precision medicine research to optimize treatment efficacy and safety.
  • Targeting a cohort of over 300 SPHERES Registry participants, the biospecimen collection will include multiple treatment regimens, including relapse events.
  • "The dedication of patients and healthcare providers to make the SPHERES Registry a success is truly remarkable.
  • The SPHERES Registry includes NMO, MOGAD, and seronegative NMOSD patients.

CHOP Researcher Leads International Panel in Developing First-Ever Clinical Diagnosis Guidelines for MOGAD

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星期五, 二月 17, 2023
Consensus, Online, The Lancet, Brain, Spinal cord, Paratriathlon, Confusion, Child, Mayo Clinic, Diagnosis, Clinical professor, Seizure, Division, Weakness, Patient, Hospital, Inflammation, Lancet Neurology, Cuban Neuroscience Center, MOG, DSM-IV codes, MOGAD, Immune system, CHOP, International, Antibody, Disease, Multiple sclerosis, Somnolence, Central nervous system, Neurological disorder, MS, Encephalopathy, Medical imaging, Neurology, MD

PHILADELPHIA, Feb. 17, 2023 /PRNewswire/ -- An international panel led by a pediatric neuroimmune expert and co-director of the Neuroscience Center at Children's Hospital of Philadelphia (CHOP) has established new criteria for properly diagnosing myelin oligodendrocyte glycoprotein antibody-associated diseased (MOGAD), a neurological disorder that causes inflammation and potential damage of the brain, spinal cord and optic nerves. While further validation is needed, these proposed guidelines, recently published in The Lancet Neurology, are the first clinical guidelines for MOGAD and provide an important framework for distinguishing MOGAD from other neurological disorders.

Key Points: 
  • While further validation is needed, these proposed guidelines, recently published in The Lancet Neurology , are the first clinical guidelines for MOGAD and provide an important framework for distinguishing MOGAD from other neurological disorders.
  • MOGAD is a demyelinating disorder of the central nervous system, meaning that damage is being caused to the myelin, or protective covering, of pathways in the brain.
  • To formulate these clinical guidelines for diagnosis, the international team conducted an extensive literature review and structured process and then derived international consensus criteria to aid in the diagnosis of MOGAD.
  • Banwell et al, "Diagnosis of myelin oligodendrocyte glycoprotein antibody-associated disease: International MOGAD Panel proposed criteria."

LAPIX Therapeutics Inc. Announces a Successful Conclusion of its Pre-IND Meeting Request with the U.S. FDA

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星期四, 一月 26, 2023
MS, Food, Multiple sclerosis, Immune system, Spectrum disorder, Regulation of food and dietary supplements by the U.S. Food and Drug Administration, FDA, Neuro, NMOSD, EAE, MOGAD, Immune tolerance, Degenerative disease, Therapy, Pharmaceutical industry, Vaccine

BOSTON, Jan. 26, 2023 (GLOBE NEWSWIRE) -- LAPIX Therapeutics, Inc. (“LAPIX”), a biopharma company focused on developing novel, orally bioavailable immune system restoration therapies for autoimmune diseases and oncology, today announced the successful outcome of its pre-IND meeting request with the U.S. Food and Drug Administration (FDA).

Key Points: 
  • BOSTON, Jan. 26, 2023 (GLOBE NEWSWIRE) -- LAPIX Therapeutics, Inc. (“LAPIX”), a biopharma company focused on developing novel, orally bioavailable immune system restoration therapies for autoimmune diseases and oncology, today announced the successful outcome of its pre-IND meeting request with the U.S. Food and Drug Administration (FDA).
  • The meeting’s objective was to achieve alignment with the FDA on LAPIX’s IND-enabling plan for its novel, first-in-class, immune tolerance restoration small molecule, LPX-TI641, under development for neuro-autoimmune indications such as multiple sclerosis (MS), Neuromyelitis Optica Spectrum Disorders (NMOSD), and Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD).
  • We also expect it to be safe enough for early and long-term use,” said Anas M. Fathallah, Ph.D., President, and Co-founder of LAPIX.
  • “The outcome of this meeting request supports LAPIX’s IND-enabling plan and we now have a path forward to the clinic.”

The Sumaira Foundation Announces Acquisition of the Connor B. Judge Foundation

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星期四, 八月 4, 2022
MOGAD, Vomiting, Neuromyelitis optica spectrum disorder, CNS, Common, Leadership, Connor, Paraplegia, Research, TSF, Caregiver, Cleveland Clinic, Foundation, Patient, NMO, Academic health science centre, Cell, Shake it Up Australia Foundation, Color, Family, Education, MOG, Severe cognitive impairment, Central nervous system, Spasticity, Awareness, Hiccup, Degenerative disease, Seizure, Cleveland, Weakness, Hypoesthesia, NMOSD, Immune system, Paralysis, Organization, Pharmaceutical industry, Management, Medicine

Judge Foundation (CBJF), a nonprofit started in 2014 to raise awareness and support research for NMOSD and other related autoimmune disorders.

Key Points: 
  • Judge Foundation (CBJF), a nonprofit started in 2014 to raise awareness and support research for NMOSD and other related autoimmune disorders.
  • The Sumaira Foundation is a 501(c)(3) organization dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).
  • The Foundation also works to foster real connections between people affected by NMOSD and MOGAD through its international Ambassador Program.
  • Judge Foundation (CBJF), a family-based nonprofit with a mission to raise awareness and fund research for NMOSD and other severe autoimmune diseases.