This page is the entry point to the organizations in the Atlas. An entry describes what an organization says it does, with a link to its own page. An entry is not an endorsement or a recommendation. If you are looking for support, families can start with a foundation or patient group. If you are a clinician looking for specialist advice, start with a surveillance centre or clinic.
How are organizations grouped?
| Group | Who is in it |
|---|---|
| Surveillance centres | National centres that track and test for prion disease |
| Research labs | Academic and public laboratories |
| Hospitals and clinics | Clinical services that see people with prion disease |
| Foundations and patient groups | Charities and family support groups |
| Companies | Drug, diagnostic and technology developers |
| Regulators and agencies | Bodies that license, advise or set rules |
| Funders | Organizations that pay for research |
| ABI | A single entry |
| ACDP TSE subgroup | A UK advisory subgroup |
What do some of these organizations do?
The CJD Foundation is a nonprofit that supports families affected by prion disease. It runs a HelpLine seven days a week, offers referrals, support groups and webinars, holds an annual family conference and gives research grants chosen by a scientific advisory committee. Its audience includes families, caregivers, clinicians and researchers.
The University of Edinburgh hosts the UK national reference RT-QuIC testing laboratory, which runs the spinal fluid test for clinicians, and a CJD pathology service that advises on suspected cases. For clinical advice on a suspected case, it points clinicians to the National Prion Clinic.
The National Prion Disease Pathology Surveillance Center is part of the School of Medicine at Case Western Reserve University.
How do I find regulators and funders?
Rules and the bodies that apply them are on Regulations. Money for research is on Funding programs. Studies from these groups are on Key papers. Unfamiliar terms are defined in the Glossary. The Atlas home lists the other sections.
Explore
- Association of British InsurersThe Association of British Insurers (ABI) is the UK trade body for insurance and long-term savings firms, formed in 1985 and funded by member subscriptions.
- Advisory Committee on Dangerous Pathogens TSE Subgroup (ACDP TSE Subgroup), United KingdomThe ACDP TSE Subgroup is the expert subgroup on transmissible spongiform encephalopathies (prion diseases) of the UK Advisory Committee on Dangerous Pathogens.
- AFIFF Associazione Familiari Insonnia Familiare Fatale ODV (Treviso)AFIFF is a volunteer organisation (ODV) of families affected by fatal familial insomnia, based at the Treviso hospital in Veneto, Italy, founded in 20
- Associazione Italiana Encefalopatie da Prioni (AIEnP)AIEnP is an Italian non-profit association (ONLUS) for families of people with human prion diseases, registered in Rome under codice fiscale 97481260582.
All India Institute of Medical Sciences (AIIMS) Bibinagar, Hyderabad, Department of NeurologyAIIMS Bibinagar is a central government Institute of National Importance near Hyderabad, Telangana, set up in 2019 under Phase VII of the Pradhan Mant
All India Institute of Medical Sciences (AIIMS) Rishikesh, Department of NeurologyAIIMS Rishikesh is a central government Institute of National Importance in Uttarakhand, one of the six new AIIMS built under phase I of the Pradhan M
Alberta Prion Research InstituteThe Alberta Prion Research Institute (APRI, also called the Prion Institute) was a provincial research funder set up by the Government of Alberta in 2
Alnylam PharmaceuticalsAlnylam is an RNAi therapeutics company and Regeneron's partner in a 2019 collaboration on eye and CNS targets.
Amprion Inc.Amprion is a San Diego diagnostics company that began with prion detection and now sells a seed amplification test for misfolded alpha-synuclein, not for prions.
ANSES Lyon laboratory (French agency for food, environmental and occupational health and safety)The Lyon laboratory of ANSES, the French public agency for food, environmental and occupational health safety, is France's national reference laborato
ANSM, Agence nationale de securite du medicament et des produits de sante (French medicines and health products safety agency)The ANSM is the French state agency that authorises and monitors health products: medicines, vaccines, biological products such as labile blood produc
Animal and Plant Health Agency (APHA), Weybridge, UKAPHA is the UK government animal and plant health agency, an executive agency of Defra with its headquarters and main laboratories at Weybridge, Surre- APHP Department of Genetics, Pitie-Salpetriere University Hospital, Paris (presymptomatic testing consultations for PRNP)The clinical genetics department of the Pitie-Salpetriere hospital in Paris, part of the Paris public hospital system (AP-HP), is the place where peop
- Arbeitskreis Blut (German national advisory committee on blood, based at the Robert Koch Institute)The Arbeitskreis Blut (AK Blut) is the expert committee on blood products and blood donation and transfusion services that the German Federal Ministry
Atlas Molecular Pharma S.L., Derio (Bizkaia), private prion research companyAtlas Molecular Pharma is a small private drug discovery company in the Bizkaia Technology Park at Derio, founded in September 2015 as a spin-off of the CIC bioGUNE research centre.
CJD Support Group Network (Australia)The CJD Support Group Network (CJDSGN) is the Australian national support and advocacy charity for people affected by CJD and other prion diseases.
Basque Brain Bank (Banco de Cerebros del Pais Vasco, BIOEF)The Basque Brain Bank is the neurological tissue bank and brain donation programme of the Biobanco Vasco para la Investigacion (O+eHun), a networked b
Blueprint GeneticsBlueprint Genetics Oy is a clinical genetic testing laboratory founded in 2012 in the Helsinki area of Finland and owned by Quest Diagnostics since January 2020.- IRCCS Istituto delle Scienze Neurologiche di Bologna and University of Bologna (neuropathology and prion diagnostics)IRCCS Institute of Neurological Sciences of Bologna (ISNB), a major Italian prion reference laboratory run within the Parchi neuropathology program; i
- Broad Institute: Vallabh/Minikel Prion Therapeutic Science programBroad Institute program led by Sonia Vallabh and Eric Minikel (Prions@Broad, launched 2015; Prion Therapeutic Science program).
- Fondazione IRCCS Istituto Neurologico Carlo Besta, MilanThe Carlo Besta institute is a public research hospital in Milan for neurology and neurosurgery, founded in 1918, classed as an IRCCS (research hospit
Catalan Sub-directorate General for Surveillance and Response to Public Health Emergencies (SGVRESP, Secretaria de Salut Publica, Departament de Salut; ASPCAT), human TSE (CJD) surveillanceHuman prion disease surveillance in Catalonia runs through the regional epidemiological surveillance network (XVEC), coordinated by the Subdireccio Ge- CEA SEPIA, prion and atypical infections unit of the French Alternative Energies and Atomic Energy Commission (Fontenay-aux-Roses)SEPIA (Service d'Etude des Prions et des Infections Atypiques) is the prion research unit of the French CEA at its Fontenay-aux-Roses site, part of th
CeGaT GmbHCeGaT GmbH is a privately held genetic testing laboratory founded in 2009 in Tuebingen, Germany, run by its founders Saskia and Dirk Biskup and fully 
Canadian Food Inspection Agency, National Centre for Animal Disease, Lethbridge (WOAH reference laboratory for BSE)The National Centre for Animal Disease (NCAD) in Lethbridge County, Alberta, is a federal Canadian Food Inspection Agency (CFIA) laboratory, first ope
Canadian Food Inspection Agency, Ottawa Laboratory Fallowfield, national and WOAH reference laboratory for scrapie and CWDThe Ottawa Animal Health Laboratory is a federal Canadian Food Inspection Agency (CFIA) laboratory on the Ottawa Laboratory (Fallowfield) campus, 3851
CIBERINFEC, Centro de Investigacion Biomedica en Red de Enfermedades Infecciosas, SpainCIBERINFEC is the infectious diseases thematic area of CIBER, the networked biomedical research consortium of the Instituto de Salud Carlos III in Spain.
CIBERNED, Centro de Investigacion Biomedica en Red sobre Enfermedades Neurodegenerativas, SpainCIBERNED is the neurodegenerative diseases area of CIBER, a Spanish research consortium that depends on the Instituto de Salud Carlos III (ISCIII), co- Dulbecco Telethon Laboratory of Prions and Amyloids, CIBIO, University of TrentoThis is an academic research laboratory in the Department of Cellular, Computational and Integrative Biology (CIBIO) of the University of Trento, at the Povo science campus.
CIC bioGUNE Prion Research Lab (Basque Research and Technology Alliance)CIC bioGUNE in Derio, Spain, home of Joaquin Castilla's Prion Research Lab, which holds a 2024 CJD Foundation grant for dominant-negative protein gene- CIMUS Biomedical Research Institute, University of Santiago de Compostela (Requena prion structure group)CIMUS (also written CiMUS) is a singular research centre of the University of Santiago de Compostela in Galicia, Spain, focused on molecular medicine
- CISA-INIA, Centro de Investigacion en Sanidad Animal, Valdeolmos, Spain (prion group)CISA is the Spanish animal health research centre at Valdeolmos, outside Madrid, created in 1993 and now part of the INIA within the CSIC.
CJD Care India, support network for people affected by prion disease in India (since 2017)CJD Care India is a small volunteer style support network for people in India affected by CJD and other prion diseases.
CJD FoundationUS nonprofit led by families that funds human prion disease research, supports families (genetic counseling guidance, support resources, an annual Fam
CJD International Support Alliance (CJDISA)CJDISA is an international coalition of national, grassroots nonprofit support groups for people affected by or at risk of prion disease, their families and carers.- Canadian Creutzfeldt-Jakob Disease Surveillance System (CJDSS), Public Health Agency of Canada, OttawaThe CJDSS is the national surveillance program for human prion disease in Canada, run from Ottawa by the Public Health Agency of Canada (PHAC), a federal government agency.
- Commission on Human Medicines (CHM), United KingdomThe Commission on Human Medicines is the statutory UK expert committee that advises health ministers and the licensing authority (the MHRA) on the saf
- Companies
- Prion Research Center, Colorado State UniversityThe Prion Research Center is a research center inside Colorado State University, not a separate legal body and not a clinic.
D-Gen Ltd (UK prion diagnostics company linked to the MRC Prion Unit)D-Gen Limited is a small private company registered in England, number 03670478, incorporated on 19 November 1998 and active on the Companies House re
DNA Labs IndiaDNA Labs India is a Hyderabad based commercial testing business, registered on its ISO certificate as M/S.- Danish Reference Center for Prion DiseasesThe Danish Reference Center for Prion Diseases (DRCPD) is a unit of the Department of Pathology at Copenhagen University Hospital, Rigshospitalet, run
European Centre for Disease Prevention and Control (ECDC), StockholmECDC is the EU agency for infectious disease threats, operating since 2005 from Stockholm with about 300 staff.- European Directorate for the Quality of Medicines and HealthCare (EDQM), Council of Europe, Blood Guide and transfusion standardsThe EDQM is a directorate of the Council of Europe in Strasbourg.
- Etablissement Francais du Sang (French national blood service)The Etablissement Francais du Sang (EFS) is the French public blood service, created on 1 January 2000 under a 1998 health safety law as the successor
European Food Safety Authority (EFSA), ParmaEFSA is the EU agency for scientific advice on food and feed safety.- Eli Lilly and Company (owner of ST-506 and the Sangamo zinc finger and capsid platforms)Eli Lilly is a large US pharmaceutical company that, through a 2026 bankruptcy auction, bought the prion disease gene therapy program ST-506 together
EMA, European Medicines Agency (CHMP position on CJD and plasma-derived and urine-derived medicinal products)The European Medicines Agency is the decentralised EU agency that runs the scientific evaluation, supervision and safety monitoring of medicines, set - EU reference laboratory for TSEs (consortium led by the Istituto Zooprofilattico Sperimentale del Piemonte, Liguria e Valle d Aosta, Turin, with the Istituto Superiore di Sanita, Rome)The EU reference laboratory (EURL) for transmissible spongiform encephalopathies (TSEs) is the top laboratory for animal prion disease testing in the EU.
- EUROCJD, Creutzfeldt-Jakob Disease International Surveillance NetworkEuroCJD is the European network of national CJD surveillance centres.
Fundacion Espanola de Enfermedades Prionicas (FEEP), SpainFEEP is the Spanish national non-profit for people affected by prion diseases and their families.
Australian National CJD Registry (Florey Institute and University of Melbourne)Australian National CJD Registry at the Florey Institute and University of Melbourne: runs CSF 14-3-3 and RT-QuIC testing, offers tissue codon 129 gen
Fondazione Telethon, ItalyFondazione Telethon is an Italian non-profit, founded in 1990 and now registered as a third sector body, whose mission is to fund Italian research on rare genetic diseases.- Foundations and patient groups
French national surveillance network for Creutzfeldt-Jakob disease and related diseases (RNS-MCJ), coordinated by Sante publique France and Inserm with AP-HP and the Paris Brain InstituteFrance has run active national surveillance of human prion diseases since 1992, through a network of volunteer neurologists, laboratories and neuropat- Fulgent Genetics, Inc.Fulgent Genetics, Inc. is a Delaware company founded in 2011 and listed on NASDAQ as FLGT since September 2016, now headquartered at 4399 Santa Anita
- Funders
- Gate BioscienceCalifornia biotechnology company developing oral Molecular Gate small molecules; its prion program (MG-813) is led by Nina Oberbeck and collaborates w
- National Reference Center for TSE and CJD Surveillance, University Medical Center Goettingen (with DZNE Goettingen)This is Germany's official national reference center for human prion diseases.
- Hospices Civils de Lyon, neurological hospital laboratory for neurodegenerative pathologies (LBMMS) and BIORAN teamA hospital biology laboratory of the Hospices Civils de Lyon (HCL), the Lyon university hospital, based at the Centre de Biologie et Pathologie Est in
- HCSP, Haut Conseil de la sante publique (French High Council for Public Health)The HCSP is the French national advisory body on public health.
Hospital Clinic de Barcelona and IDIBAPS, Neurology Service (prion disease referral centre for Catalonia)Hospital Clinic de Barcelona is a public university hospital whose Alzheimer and other Cognitive Disorders Unit, in the Neurology Service, describes i- Hospitals and clinics
- Hospital Universitario Fundacion Alcorcon neuropathology and brain bank, Spanish reference centre for autopsies in suspected human prion diseaseHospital Universitario Fundacion Alcorcon (HUFA) is a public hospital of the Comunidad de Madrid whose neuropathology laboratory and brain bank have s
Paris Brain Institute (Institut du Cerveau, ICM), prion disease group at Sorbonne Universite with Inserm and CNRSThe Paris Brain Institute (Institut du Cerveau, ICM) is a brain research institute founded in 2010 on the Pitie-Salpetriere hospital site in Paris, ru
IDIBELL and Bellvitge University Hospital neuropathology and brain bank, Hospitalet de LlobregatBellvitge University Hospital (HUB) and its research institute IDIBELL, in L'Hospitalet de Llobregat near Barcelona, hosted one of the main Spanish hu- Bioaraba Health Research Institute (IIS Bioaraba), Vitoria-Gasteiz, SpainBioaraba is the public health research institute of Araba province in the Basque Country, set up under a 2017 agreement between BIOEF, the University
- Istituto Italiano di Tecnologia, Genoa (molecular modelling and drug discovery, translational pharmacology and analytical chemistry)The Istituto Italiano di Tecnologia is a private foundation in Genoa, set up in 2003, with headquarters at Via Morego and a network of research centres.
INRAE ENVT UMR 1225 IHAP, host pathogen interactions unit, Ecole Nationale Veterinaire de ToulouseIHAP is a joint research unit on the campus of the Ecole Nationale Veterinaire de Toulouse, founded in 2003, with about a hundred scientists and techn
Protein macro-assembly and prion diseases team (MAP2), Molecular Virology and Immunology unit (VIM, UMR 0892), INRAE Jouy-en-JosasThis is the prion laboratory of INRAE at the Jouy-en-Josas campus near Paris.- Department of Biotechnology and Life Sciences, University of Insubria, VareseThe Department of Biotechnology and Life Sciences (DBSV) of the University of Insubria was set up in 2011 to put biology, biotechnology and medicine i
Ionis PharmaceuticalsUS antisense company (Carlsbad, California) that develops ION717, the first PrP-lowering drug tested in people, in the PrProfile trial.
International Plasma and Fractionation Association (IPFA), AmsterdamIPFA is an Amsterdam based association of not-for-profit organisations that collect plasma, test it, or fractionate it into medicines; it presents its- IRTA-CRESA, Animal Health Research Centre of the Institute of Agrifood Research and Technology (Catalonia), prion groupIRTA-CReSA is the animal health research centre of IRTA, the Catalan public institute for agrifood research and technology, on the Universitat Autonom
ISCIII Centro Nacional de Epidemiologia, Spanish national registry of human TSE (RNEETH)The Centro Nacional de Epidemiologia (CNE, National Epidemiology Centre) of the Instituto de Salud Carlos III in Madrid coordinates national surveilla
ISCIII Centro Nacional de Microbiologia, spongiform encephalopathies reference laboratoryA laboratory of the Instituto de Salud Carlos III (ISCIII) in Madrid that runs the national premortem tests for suspected human prion disease in Spain
Istituto Superiore di Sanita, Rome (Italian national CJD registry; EUROCJD partner)The Istituto Superiore di Sanita (ISS) is the Italian national public health research body, a public research institution supervised by the Ministry o- Joint UK Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee (JPAC)JPAC is the joint professional advisory committee of the four UK blood and tissue services: NHS Blood and Transplant, the Scottish National Blood Tran
- Labcorp Genetics (formerly Invitae)Labcorp Genetics is the genetics business formed from the assets of Invitae, a San Francisco genetic testing company that filed for chapter 11 in Febr
- Laboratorio Central de Veterinaria, Algete (Spanish central veterinary laboratory, TSE confirmation)The Laboratorio Central de Veterinaria (LCV) is the Spanish agriculture ministry's own central animal health laboratory, at Carretera M-106 km 1.4 in Algete, north-east of Madrid.
LFB, Laboratoire francais du fractionnement et des biotechnologies (French plasma fractionator)LFB is the French plasma fractionator: the company that turns plasma collected in France into medicines such as clotting factors, immunoglobulins and albumin.- Linkoping University, IFM chemistry, luminescent conjugated oligothiophene group (Nilsson and Hammarstrom)Two closely linked research groups in the Division of Chemistry of the Department of Physics, Chemistry and Biology (IFM) at Linkoping University, Swe
Istituto di Ricerche Farmacologiche Mario Negri IRCCS, MilanThe Mario Negri Institute is a private, non-profit Italian research foundation opened in Milan in 1963 with the bequest of Mario Negri, recognised by 
Weissman Hood Institute at Touro UniversityThe Weissman Hood Institute at Touro University is the current name of the McLaughlin Research Institute in Great Falls, Montana, a small independent - Medicines and Healthcare products Regulatory Agency (MHRA), United KingdomThe MHRA is the UK regulator for medicines, medical devices and blood components for transfusion, and an executive agency of the Department of Health and Social Care.
- MRC Prion Unit at UCL (UCL Institute of Prion Diseases and National Prion Clinic)UCL unit and Institute of Prion Diseases that runs the UK National Prion Clinic, the National Prion Monitoring Cohort and the PRN100 antibody work, an
- National Prion Clinic (UCLH and UCL), LondonUK national referral centre for prion disease at the National Hospital for Neurology and Neurosurgery (UCLH), led by John Collinge with Simon Mead as
NEIKER, Basque Institute for Agricultural Research and Development, animal health departmentNEIKER is the Basque Government's agricultural research institute, a public company based at Arkaute in Alava and Derio in Bizkaia, constituted in 199
NIH NeuroNEXT (NINDS)NIH NINDS NeuroNEXT clinical trial network that funds and hosts the PRiSM project (NN112), including its five clinical sites and observational arm.
NeuroPrion, European prion research network of excellence and successor associationNeuroPrion began as an EU Sixth Framework network of excellence on prion diseases, running from 1 September 2003 to 31 December 2009 with 14.4 million- NHS Blood and Transplant (NHSBT), EnglandNHS Blood and Transplant is the blood service for England and one of the four UK blood services whose donor selection guidelines are set through JPAC.
- NIAID Rocky Mountain Laboratories (Laboratory of Neurological Infections and Immunity)NIAID Rocky Mountain Laboratories in Hamilton, Montana, where the RT-QuIC test was built.
CJD Resource Centre, NIBSC (MHRA), United KingdomThe CJD Resource Centre is a UK research tissue bank that supplies characterised reference material for developing and testing prion diagnostics.
National Institute for Biological Standards and Control (NIBSC), MHRA, United KingdomNIBSC is the UK public laboratory that makes and holds reference materials for biological medicines and diagnostics, does independent batch release te
NIMHANS, Bengaluru (CJD registry, neuropathology and brain bank)Bengaluru neuroscience institute that hosts India's longest-running CJD registry (69 cases in the 1968 to 1997 period, 85 recorded to 2005) and built an in-house CSF 14-3-3 assay.- Norwegian Institute for Nature Research (NINA), TrondheimNINA is an independent Norwegian research foundation that studies nature and how people and nature interact, set up in 1988 and based in Trondheim wit
Norwegian Environment Agency (Miljodirektoratet)The Norwegian Environment Agency is the national directorate under the Ministry of Climate and Environment for climate, nature management and pollutio
Norwegian Food Safety Authority (Mattilsynet)Mattilsynet is Norway's national food safety and animal health authority, set up in 2003 and operating from 2004 by merging earlier agriculture, anima- Norwegian Veterinary Institute, prion and atypical scrapie groupThe Norwegian Veterinary Institute is Norway's biomedical research institute and national centre of expertise in biosecurity for fish and land animals
- National Prion Disease Pathology Surveillance Center (NPDPSC)The US national reference center for prion disease at Case Western Reserve University: coordinates autopsies, runs the nation's clinical reference lab
National Society of Genetic CounselorsThe National Society of Genetic Counselors (NSGC) is the US based professional society for genetic counsellors, with its executive office in Chicago.- Austrian Reference Centre for Human Prion Diseases (OERPE), ViennaOERPE is Austria's national reference centre for human prion disease.
- Paul-Ehrlich-Institut (German federal institute for vaccines and biomedicines, competent authority for blood products)The Paul-Ehrlich-Institut (PEI) in Langen, Hesse, is a senior federal authority under the German Federal Ministry of Health that authorises and contro
- Public Health Agency of Canada and University of Manitoba (national prion laboratory)This entry covers the Canadian federal public health system for human prion disease, which has two linked parts inside the Public Health Agency of Can
Plasma Protein Therapeutics Association (PPTA)The Plasma Protein Therapeutics Association (PPTA) is the trade association of private plasma collectors and companies that make medicines from human - Priogen Corp (University of Minnesota spinout for prion and CWD testing, Minneapolis)Priogen Corp is a small Minnesota company spun out of the University of Minnesota in 2022 to sell prion seed amplification tests and reagents.
- Prion AllianceUS 501(c)(3) charity founded in 2012 by Sonia Vallabh and Eric Minikel that raises donations for prion research, funds the MGH biomarker cohort and pa
- Regeneron PharmaceuticalsUS biopharma company sponsoring ALN-6457, the PRNP-targeting program from its 2019 collaboration with Alnylam on RNAi therapeutics for eye and CNS tar
- Basque Country registry of human spongiform encephalopathies (Registro de Enfermedades Espongiformes, Basque Government Department of Health)The Basque Government Department of Health set up a population based registry of spongiform encephalopathies in 1995, following the European concerted
- Regulators and agencies
- Research labs and institutes
- Robert Koch Institute, Prion and Prionoid Research Unit (Berlin)The Prion and Prionoid Research Unit is a laboratory group at the Robert Koch Institute (RKI), Germany's federal public health institute, in Berlin.
The Roslin Institute, University of EdinburghThe Roslin Institute is an animal science research institute of the University of Edinburgh, part of the Royal (Dick) School of Veterinary Studies at - Institute of Neuropathology, Saarland University Medical Centre (Homburg)University hospital neuropathology institute in Homburg (Saarland, Germany) that combines routine diagnostic neuropathology (brain tumours, muscle and
- Transgenic Facility, Department of Medicine, University of SalamancaThe Transgenic Facility is a mouse genetic modification service of the University of Salamanca, part of the NUCLEUS research support platform, with it
- Sangamo TherapeuticsGene therapy company that developed ST-506, a one-time zinc finger repressor of PRNP; it filed Chapter 11 on 23 June 2026 and sold ST-506 and its zinc
- Sheba Medical Center (Chaim Sheba, Tel Hashomer), Department of NeurologyThe Department of Neurology at Chaim Sheba Medical Center, Tel Hashomer (Ramat Gan, Israel) is a general hospital neurology department that treats str
Sibylla BiotechSibylla Biotech is a private Italian drug discovery company, now based in Bresso near Milan, that holds the PPI-FIT technology: computer simulation of
SISSA Trieste, prion biology laboratory (Legname)The Laboratory of Prion Biology is a basic research group at SISSA (Scuola Internazionale Superiore di Studi Avanzati) in Trieste, Italy, led by Giuse- Surveillance centres
- Tanz Centre for Research in Neurodegenerative Diseases, University of TorontoTanz Centre for Research in Neurodegenerative Diseases, University of Toronto, home of Gerold Schmitt-Ulms's brain-penetrant cardiac glycoside program (KDC203) lowering PrPC.
- Tel Aviv Medical Center (Sourasky), Cognitive Neurology UnitTel Aviv Sourasky Medical Center, home of the Cognitive Neurology Unit that runs the natural history study of preclinical genetic CJD in the world's l
Tel Aviv University (Gray Faculty of Medical and Health Sciences and Sagol School of Neuroscience)Tel Aviv University is a large public research university in Israel; its medical faculty, founded in 1964, was the Sackler Faculty of Medicine until 2
Touro University (Touro College of Osteopathic Medicine, Montana)Touro University is a private United States university system founded in New York in 1970, with over 20,000 students across many schools.
Centre for Prions and Protein Folding Diseases, University of AlbertaThe Centre for Prions and Protein Folding Diseases is a multi-faculty research centre of the University of Alberta in Edmonton, not a separate legal body and not a clinic.
Calgary Prion Research Unit, Faculty of Veterinary Medicine, University of CalgaryThe Calgary Prion Research Unit (CPRU) is a research unit run by the Faculty of Veterinary Medicine at the University of Calgary, Alberta.
UCSF Institute for Neurodegenerative DiseasesThe Institute for Neurodegenerative Diseases (IND) is a research institute inside the University of California San Francisco, not a separate legal body and not a clinic.
UCSF Memory and Aging CenterUCSF Memory and Aging Center, where Michael Geschwind leads the rapidly progressive dementia clinical research program and ran NIH-funded cohorts in genetic prion disease.
CJD Support Network (UK), national charity for all forms of CJD and prion diseaseThe CJD Support Network (CJDSN) is a small UK charity, registered in England and Wales as charity 1097173, that supports people affected by any form o
National CJD Research and Surveillance Unit, University of EdinburghNational CJD Research and Surveillance Unit at the University of Edinburgh, founded in 1990.- Institute of Neuropathology, University Medical Center Hamburg-EppendorfThe Institute of Neuropathology is an institute of the University Medical Center Hamburg-Eppendorf (UKE).
- UMass Chan Medical School (Khvorova lab)UMass Chan Medical School, home of the Khvorova lab that invented the divalent siRNA scaffold used in the PRiSM drug; it licenses oligonucleotide prog
- Minnesota Center for Prion Research and Outreach (MNPRO), University of MinnesotaThe Minnesota Center for Prion Research and Outreach (MNPRO) is a research centre in the College of Veterinary Medicine of the University of Minnesota, St.
- University of Verona, neurology prion research group (Zanusso)A neurology and neuropathology research group in the Department of Neurosciences, Biomedicine and Movement Sciences of the University of Verona, assoc
Universidad de Zaragoza prion research group and Centro de Encefalopatias y Enfermedades Transmisibles Emergentes (CEETE), lead partner of Interreg REDPRION and partner in NEURO-COOPThe University of Zaragoza veterinary prion group, now housed in the Centro de Encefalopatias y Enfermedades Transmisibles Emergentes on the veterinar- USDA Animal and Plant Health Inspection Service (APHIS), including the National Veterinary Services Laboratories, AmesAPHIS is the animal and plant health agency of the US Department of Agriculture.
- USDA ARS National Animal Disease Center (Ames, Iowa)The National Animal Disease Center (NADC) in Ames, Iowa is a federal laboratory of the US Department of Agriculture's Agricultural Research Service.
- University of Texas Health Science Center at Houston (UTHealth Houston)UTHealth Houston is a public academic health institution in the University of Texas System; its McGovern Medical School Department of Neurology hosts
- Institute of Neuropathology, University Hospital Zurich (Swiss National Reference Center for Human Prion Diseases)University of Zurich Institute of Neuropathology, where Adriano Aguzzi and Davide Caredio hold a 2024 CJD Foundation grant on GPNMB and co-authored th
Norwegian Scientific Committee for Food and Environment (VKM)VKM is Norway's independent scientific committee for risk assessment on food and environment, set up in 2004 and known until November 2017 as the Norw- Whitehead Institute and MIT (Weissman lab)Whitehead Institute (Cambridge, Massachusetts), where Jonathan Weissman's lab built CHARM, the compact epigenetic editor that silences the prion protein gene in mouse brain.
World Organisation for Animal Health (WOAH, formerly OIE)WOAH is the intergovernmental body for animal health, founded in 1924 in Paris as the Office International des Epizooties (OIE) and now working with 183 Members.