activities · 13
what they do
direct service · 6
- CPAE/PANS Disease Awareness Campaigns Chronic Disease Self-Management EducationCreates awareness programs and develops disease awareness campaigns in states nationwide to educate patients and donors about improved treatments for CPAE-related diseases.
- Disease Awareness Campaigns Chronic Disease Self-Management EducationCreates awareness programs and develops disease awareness campaigns to educate patients and donors about improved treatments for CPAE-related diseases.
- Disease Awareness Campaigns Chronic Disease Self-Management EducationCreates awareness programs and develops disease awareness campaigns in states nationwide to educate patients and donors about improved treatments for CPAE-related diseases.
- Reducing IVIG Treatments for PANS/PANDAS Pediatric Neurological Autoimmune Disorder Research and TreatmentContributes to reducing the percentage of children requiring IVIG treatments for PANS/PANDAS in some regional areas.
- Support for CPAE/PANS Treatment Pediatric Neurological Autoimmune Disorder Research and TreatmentCollaborates with partner organizations and medical institutions to support the treatment of children with CPAE, PANS, and PANDAS, including establishing a network of specialized clinics for diagnosis and treatment.
- Support for CPAE/PANS Treatment and Diagnosis Pediatric Neurological Autoimmune Disorder Research and TreatmentCollaborates with partner organizations and medical institutions to support the treatment of children with CPAE and PANS, and establishes a network of specialized clinics for diagnosing and treating these disorders.
advocacy · 3
- Advocacy for CPAE/PANS Funding and Policy Pediatric Neurological Autoimmune Disorder Research and TreatmentSecures grants, develops and monitors public policy initiatives to improve insurance reimbursement, patient access, and safety of IVIG therapy, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
- Advocacy for CPAE/PANS Research and Policy Pediatric Neurological Autoimmune Disorder Research and TreatmentSecures grants for medical and clinical research, develops and monitors public policy initiatives to improve patient access and treatment, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
- Advocacy for CPAE/PANS Research and Policy Pediatric Neurological Autoimmune Disorder Research and TreatmentSecures grants for medical and clinical research, develops and monitors public policy initiatives to improve insurance reimbursement and patient access, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
research · 2
- Research Support for CPAE/PANS Pediatric Neurological Autoimmune Disorder Research and TreatmentAssists university medical centers in conducting clinical trials and supports research to generate evidence-based data on treatment protocols and improve diagnostic and treatment options for physicians managing CPAE/PANS.
- Research Support for CPAE/PANS Pediatric Neurological Autoimmune Disorder Research and TreatmentAssists university medical centers in conducting clinical trials and supports research to generate evidence-based data on treatment protocols and improve diagnostic and treatment options for CPAE/PANS.
capacity building · 2
- Establishment of CPAE Centers and Clinics Pediatric Neurological Autoimmune Disorder Research and TreatmentPaves the way for the opening of CPAE Centers of Excellence and regional CPAE clinics throughout the United States, and supports clinics that advance the understanding, diagnosis, and treatment of PANS and PANDAS.
- Medical Community Education and Outreach Pediatric Neurological Autoimmune Disorder Research and TreatmentConducts education and outreach programs to increase the medical community's understanding of PANS/PANDAS and CPAE disorders.
strategies · 16
how they think
Theories of action extracted from this org's own source material. Click any to see the full field of orgs running the same approach.
- Advocacy and government relations strategy government_relations_advocacyEngages in national legislative and agency advocacy to increase awareness, secure funding, and support policy development for children's postinfectious autoimmune neurological disorders.
- Advocating for awareness, funding, and policy change government_relations_advocacyThe organization engages in legislative and agency advocacy, and national advocacy efforts, to promote awareness, secure funding, and influence policy for research, diagnosis, and treatment of children's postinfectious autoimmune neurological disorders.
- Advocating for awareness, funding, and treatment access government_relations_advocacyThe organization engages in legislative and agency advocacy, and national advocacy efforts, to promote awareness, secure funding, and improve access to diagnosis and treatment for children with postinfectious autoimmune neurological disorders.
- Collaborative care model for CPAE/PANS collaborative_care_modelUses collaborative partnerships among clinical, research, and institutional stakeholders to advance treatment and standardize care for children with CPAE and PANS, leveraging shared expertise and resources across a national network.
- Educational outreach for early diagnosis educational resourcesProvides educational resources, such as clinical pamphlets, to equip primary care providers with tools to identify and treat CPAE disorders early, improving diagnostic accuracy and access to care.
- Establishing multidisciplinary clinical models for comprehensive care multidisciplinary_clinical_modelThe organization implements and advocates for a multidisciplinary clinical model that integrates expertise from various medical fields (neurology, immunology, psychiatry, infectious disease) to provide comprehensive and world-class treatment for CPAE/PANS at leading universities globally.
- Evidence-based integrative treatment approach evidence_based_integrative_treatmentDelivers comprehensive, evidence-based treatments including antibiotics, IVIG therapy, cognitive behavioral therapy, and holistic methods to address the complex needs of children with PANS/PANDAS.
- Fostering collaborative networks for research and treatment advancement collaborative_network_modelThe organization believes that by convening partners, building collaborative networks of clinics and researchers, and coordinating a consortium of entities, it can accelerate scientific progress, standardize care, and advance treatments for children with CPAE/PANS disorders.
- Fostering collaborative networks for research and treatment advancement collaborative_network_modelThe organization believes that by convening partners, building collaborative networks of clinics and researchers, and coordinating a consortium of entities, it can accelerate scientific progress, standardize care, and advance treatment for children with CPAE/PANS disorders.
- Guiding IVIG treatment strategies and establishing specialized clinics IVIG_treatment_strategyLeveraging expertise in immunology and medical affairs, the organization guides educational, governmental, and clinical strategies for IVIG treatments and aims to establish specialized CPAE clinics nationwide at top universities to provide world-class treatment and research.
- Guiding and promoting specific evidence-based treatments evidence_based_integrative_treatmentThe organization leverages its expertise in immunology and medical affairs to guide strategies for specific treatments like IVIG, and provides evidence-based and integrative treatments including antibiotics, IVIG therapy, CBT, and holistic approaches for PANS/PANDAS.
- IVIG treatment strategy for CPAE disorders IVIG treatment strategy for CPAE disordersLeverages expertise in immunology and medical affairs to guide the clinical implementation and policy support for IVIG treatments across CPAE clinics nationwide.
- Implementing a multidisciplinary clinical model for comprehensive care multidisciplinary_care_modelThe organization employs a multidisciplinary clinical model that integrates expertise from various medical fields, such as neurology, immunology, psychiatry, and infectious disease, to provide comprehensive and holistic treatment for children with CPAE/PANS disorders.
- Multi-disciplinary clinical model multi_disciplinary_clinical_modelImplements an integrated care approach combining neurology, immunology, psychiatry, and infectious disease expertise to provide comprehensive diagnosis and treatment for children with CPAE/PANS disorders.
- Providing educational resources for diagnosis and treatment educational_resourcesThe organization aims to help the community identify and understand CPAE disorders by providing educational resources, such as downloadable pamphlets, to assist primary care physicians in diagnosis and treatment.
- Research acceleration and collaboration research_acceleration_networkAccelerates scientific progress by convening research partners, guiding collaborations between clinics and universities, and promoting shared national and global research initiatives to develop advanced treatments for CPAE/PANS.
named programs · 3
what they call their work
CPAE Clinic Network
Network of specialized clinics at leading medical institutions providing multidisciplinary care for children with PANS/PANDAS, including neurology, immunology, psychiatry, and infectious disease expertise
Education and Outreach Program
Programs to educate healthcare professionals about PANS/PANDAS diagnosis and treatment protocols, including distribution of clinical guidance materials
IVIG Study
Clinical research initiative to evaluate the effectiveness of IVIG treatment protocols for children with CPAE disorders
relationships · 50
who they work with
- Arizona Department of Health Services Government — Liaison relationship to promote awareness and secure funding for CPAE-related research and treatment.
- Arizona Legislature Government — Liaison relationship to advocate for support and funding for CPAE-related initiatives.
- Arkansas Center for Health Improvement Partner — Organization founded by Dr. Smith to advance health policy and system improvements in Arkansas
- Arkansas Children’s Hospital Partner — Dr. Aravindhan Veerapandiyan, a Pediatric Neurologist at Arkansas Children’s Hospital, serves on THE PACE FOUNDATION's Medical Advisory Board.
- Banner Foundation AZ Partner — Partner organization supporting PACE Foundation's mission to treat children with CPAE and PANS.
- Banner Health Partner — Dr. Michael Daines, an Associate Professor of Pediatrics at the University of Arizona and a Pediatric Allergist-Immunologist, is affiliated with Banner Health and serves on THE PACE FOUNDATION's Medical Advisory Board.
- Banner Health Partner — Dr. Syndney Rice, a Professor of Pediatrics at the University of Arizona and active clinician caring for children, is affiliated with Banner Health and serves on THE PACE FOUNDATION's Medical Advisory Board.
- Brown University School of Medicine Partner — Affiliated with the school
- CPAE/PANS Consortium Partner — Collaborates with university medical centers in the CPAE/PANS Consortium to support clinical trials and research.
- Dartmouth CF Infant and Children Cohort Partner — Director and PI of the cohort
- Dartmouth Children’s Center Partner — Clinical Research Director at the center
- Dartmouth Children’s Environmental Health and Disease Prevention Research Center Partner — Director and PI of the center
- Dartmouth University Partner — Dr. Juliette Madan, an Associate Professor, Clinical Director, and Director/PI at Dartmouth University, serves on THE PACE FOUNDATION's Medical Advisory Board.
- Dartmouth University Partner — Hosts a CPAE/PANS Clinic.
- Dartmouth University Partner — Hosts the Neuroimmune Psychiatric Disorders (NIPD) Clinic in collaboration with The PACE Foundation
- Dartmouth-Brown Medical Program Partner — Affiliated with the program
- Duke University Medical Center Partner — Institution where Dr. Daines completed his fellowship in allergy/immunology.
- General Electric Partner — Paul Ryan's previous executive position at General Electric provided expertise to PACE.
- Greater Regional Health Center - Iowa Partner — Hosts a CPAE/PANS Clinic.
- Harvard University Partner — Hosts a CPAE/PANS Clinic.
- Harvard University Partner — Hosts the Pediatric Neuropsychiatry & Immunology Clinic as part of The PACE Foundation network
- NIH’s Genetic and Rare Diseases Information Center (GARD) Partner — Recognizes PANS and PANDAS as rare diseases.
- NIMH Partner — Collaborated to establish standards and protocols for diagnosing and treating PANS/PANDAS.
- National Organization for Rare Disorders (NORD) Partner — Recognizes PANS and PANDAS as rare diseases.
- Octapharma USA, Inc. Partner — Huub Kreuwel, Vice President of US Medical Affairs at Octapharma USA, Inc., contributes expertise in immunotherapy treatments for CPAE Disorders like PANS/PANDAS to THE PACE FOUNDATION's Board.
- Octapharma USA, Inc. Partner — Provides expertise and board leadership related to plasma therapeutics and IVIG treatments for CPAE disorders.
- PANDAS PPN Partner — Provides informative videos on PANS PANDAS CPAE
- Pediatric Psycho-Immunology & Neurology Group Partner — Director of the group
- Ryan Associates Partner — Paul Ryan's founding of Ryan Associates provided expertise to PACE.
- St. Louis University School of Medicine Partner — Institution where Dr. Daines earned his medical degree.
+ 20 more