Welcome to VIPeR!
It can be difficult for Canadians to find out about potentially life-saving clinical trials and research about Rare Diseases.
Do you want to stay informed about research in rare diseases?
VIPeR is a registry for people who have Rare Diseases or know somebody with a Rare Disease. VIPeR will contact registered members about new clinical trials and research about Rare Diseases.
Sign up for free to stay informed!
Do you have or know someone with a rare disease?
There are thousands of Rare Diseases. Some examples of diseases include MPS Storage, Mitochondrial, Lysosomal, Phenylketonuria, Fatty Acid Oxidation, Angelman Syndrome and many, many more that have their own unique name.
If you are:
At least 18 years of age, a Canadian citizen with a Rare Disease, or somebody who knows a Canadian citizen with a Rare Disease (child or adult), consider registering in VIPeR.
Your information is kept confidential according to Health Canada regulations.
17q12 CNVs Study
Learn About PRISMA's study at the University of Alberta
Individuals diagnosed with 17q12 CNVs (both the duplication and the deletion)
Between the ages of 6 months and 90 years
Fully remote
Recruiting internationally
The overarching goal of the study is to develop a medical and psychiatric blueprint for those who are diagnosed with 17q12 CNVs (both the duplication and the deletion), which can be used to create precision medicine approaches in the future. This study is REB approved through the University of Alberta and takes approximately 6 hours to complete, broken down over multiple smaller sessions. It is designed to be fully remote, with medical and family history interviews completed over zoom. Learn more on PRISMA's website.
Now Enrolling:
PALomino Pregnancy Observational Safety Study
PALomino is a global observational safety study sponsored by BioMarin Pharmaceutical Inc. to assess maternal, fetal, and infant outcomes in women exposed to Pegvaliase during pregnancy and breastfeeding. You may qualify for the study if you have taken Pegvaliase at any time during your pregnancy.
View our registered diseases below:
• Addison disease / Schmidt syndrome • Anasarca • Angelman syndrome • Autism spectrum disorder • Bleeding disorder with Hypophosphatasia / short stature • CHAMP1-related disorder • Dercum disease • Diamond–Blackfan anemia • DSP-related cardiomyopathy • Erythromelalgia • Erythropoietic Protoporphyria • Fabry disease • Familial partial lipodystrophy type 3 • Fibromuscular dysplasia • FOXG1 syndrome • FSH muscular dystrophy • Gaucher disease • Giant Axonal Neuropathy • Hunter syndrome (MPS II) • Hypermobile Ehlers–Danlos syndrome • Hypophosphatasia • I-cell disease (Mucolipidosis II) • IgG deficiency • IP08 VISS syndrome • Kabuki syndrome • KCNQ4-related hearing loss • Klippel–Feil syndrome • KPNA4-related disorder • LGI1-related epilepsy • Long QT syndrome • Lynch syndrome • Lysyl oxidase deficiency • MED12-related disorder • Melorheostosis • Mitochondrial Diseases • Moran syndrome • Morquio syndrome type A • Mucopolysaccharidosis type I • Neurofibromatosis type 1 • Niemann–Pick disease type B • Noonan syndrome • Osteogenesis Imperfecta • Phenylketonuria • PNPLA2-related neutral lipid storage myopathy • Pompe disease • Rett syndrome • SOX2-related disorder • Spinal muscular atrophy • Syringomyelia • TUBA1A-related disorder • Urea cycle disorder • Variant Turner syndrome • Vascular malformation • Wiedemann–Steiner syndrome
Who is Viper connected with?