Support groups and charities
This page has a list of hospitals, diagnostic centers and nonprofits that support patients.
Making It Better – The Daniel Courtney Trust This United Kingdom-based charity was established in 2005 in memory of Daniel Courtney, who suffered from MVID. The site includes information on the disease and ways to support those with the condition.
Oley Foundation The foundation, based in Albany, New York, works to assist patients living with IV nutrition and tube feeding, through education, advocacy and networking.
Homes for medically fragile children
This is a selection of group homes that offer care for babies and children with challenging medical conditions. There may certainly be others in your area. Bogden House Operating in Mesa, Arizona, since 1992, The Bogden House includes four group homes designed to care for children with complex medical conditions. Angela’s House With multiple homes on Long Island, New York, this group offers home care support as well as residential programs. Children’s Country Home This home in the Seattle metropolitan area has offered care to medically fragile children for two decades.
The laboratories listed on this web page currently perform genetic tests for MYO5B, the defective gene that triggers microvillus inclusion disease.