Visit website for recently discovered PAN Vasculitis.
This type of Vasculitis is thought to affect 1/3 of those affected by PAN Vasculitis. The genetic links to what is termed DADA2 were discovered in 2014. Very interesting story about the discovery and the hundreds of patients (most young children), families, physicians, and researchers internationally affected. There is much interest that other forms of Vasculitis may be genetic as well. New cases of DADA2 are discovered regularly.
This new field may be of interest to many current Vasculitis patients and medical professionals. Read the story of how a Nashville doctor discovered that two of his daughters are affected and his subsequent work in medicine and advocacy around the world. Read about the interesting patients, families and researchers involved and how they advocate for the benefit of all. This is inspirational for all of us suffering with rare diseases.
New research appears often - symptoms range widely as do the age groups and types of genetic abnormalities affected. There are both early onset and late onset disease.
The website for dada2.org is http://www.dada2.org. There is a group for patients and families on Facebook. #DADA2 , #RareDiseases , #Vasculitis , #GeneticDisorder , #GeneticCounselors , #GeneticDisorder , #GeneticTesting , #Rheumatology , #PolyarteritisNodosa , #PediatricStroke , #PediatricHypertension , #PediatricLiverDisease , #ADAdeficiency , # adenosine deaminase2 deficiency