Undiagnosed Day
29 April
In 2025, Global Undiagnosed Day
will take place in
South Africa.
Undiagnosed Day 2022
Awareness webinar
A celebration to all living with an Undiagnosed Disease and their loved ones and in memory of the ones lost
Undiagnosed Day 2022
by UDNI & Wilhelm Foundation
29th April 13:30 CEST
Click to watch webinar or scroll down to Watch here at the bottom of the page
No registration needed
All Undiagnosed should have a chance to get a diagnosis
There are 3 types of undiagnosed
-
The ones that does have a rare disease but haven't been diagnosed yet
-
The misdiagnosed
-
The ones that have a disease not discovered by medical science yet
SPEAKERS
Baynam, Gareth
Perth Children’s Hospital, Western Australia
Rare Care, Clinical Centre of Expertise for Rare and Undiagnosed Diseases at Perth Children’s Hospital, Western Australia
Boztug, Kaan
Ludwig Boltzmann Institute for Rare and Undiagnosed, Austria
Austria UDP
Casanova Might, Cristina
UDNF Undiagnosed Diseases Network Foundation, USA
Closing remarks
Cederroth, Helene & Mikk
Wilhelm Foundation, Sweden
Welcome, Thank you
Fretwell, Lily
Perth, Australia
Keynote
Gahl, William
National Institutes of Health, National Human Genome Research Institute, USA
FIrst UDP & UDNI background
Galkute, Milda
FEDER
Spain Undiagnosed patients
Giugliani Rgiugliani, Roberto
House of Rares, Porto Alegre, Brazil
Brazil undiagnosed
Claudia Gonzaga-Jauregui
Mendelian Genomics & Precision Health Laboratory, Mexico
Beauty and diversity
Guidotti, Rick
Postive Exposure, USA
Beauty and diversity
Gumus, Gulcin
Eurordis, Spain
EURORDIS' involvement in Newborn Screening
Halley, Meghan
Stanford Center for Biomedical Ethics, USA
Ethics and Undiagnosed Research
Hernandez, Helen W.
KAL Research Initiatives LLC , USA
Diagnostic code for undiagnosed
Klee, Eric
Mayo Clinic, Rochester, USA
Undiagnosed pipeline
Kenjiro Kosaki
Keio University, Tokyo Japan
Japan undiagnosed
Nordgren, Ann
Karolinska UDP, Karolinska University Hospital
Sweden undiagnosed
Olauson, Anders
Ågrenska
UN Resolution - Undiagnosed
Palmer, Elizabeth
Sydney Children's Hospital Network, Australia
UDNI Diagnostic WG
Puri, Ratna
India Undiagnosed
Institute of Medical Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi, India
Rajasimha, Harsha
Indo US Organization for Rare Diseases
IndoUSrare undiagnosed
Renton, Heather
Syndromes Without A Name (SWAN), Australia
Patient’s perspective
Schimmenti, Lisa
Mayo Clinic, Rochester, USA
Undiagnosed in USA
Szajnuk, Gina
Rare and Undiagnosed Network (RUN), Utah, USA
Gina's Story
Taruscio, Domenica
National Centre for Rare Diseases, Rome, National Institute of Health Italy
Welcome, UDNI WGs, Moderator
van Zelst-Stams, Wendy
Department of Human Genetics, Radboud University Medical Center, The Netherlands
Awareness and actions in The Netherlands
Wiafe, Samuel
Rare Disease Ghana Initiative
Undiagnosed in Ghana
Wong-Rieger, Durhane
CORD, Canada
Undiagnosed in Asia
AGENDA recorded Webinar
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