You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Reticular dysgenesis, look for clinical trials, and connect with others living with it — all in one place.
Open the full Reticular dysgenesis hub →Reticular dysgenesis is a rare condition. Also known as AK2 deficiency, De Vaal disease, SCID with sensorineural deafness, SCID with sensorineural hearing loss, Severe combined immunodeficiency with sensorineural deafness, Severe combined immunodeficiency with sensorineural hearing loss. Tomeko brings together the specialists, research, clinical trials, treatments and community for Reticular dysgenesis so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:33355 · OMIM 267500 · ICD-10 D81.0 · GARD 0008625
Start by learning the basics from an authoritative source, find a specialist or center that sees Reticular dysgenesis, and connect with a patient organization. Tomeko brings these together on one hub.
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Reticular dysgenesis, filtered to your area.
Tomeko shows live, recruiting studies for Reticular dysgenesis from ClinicalTrials.gov on the hub.