I am researching three individuals' ancestries for family histories of Acute Intermittent Porphyria and VP. Current trees include the extended families the Albert, Cowett/Cauette, Belanger, Dionne, Michaud, Cote and others of Quebec and Maine; Pegg and Gribbens families of Washington State and Ireland; and Christiansen family of Utah and Denmark.
Access to each of these trees can be provided for others who have AIP or VP for the purpose of links to common ancestries of others who have or suspect these porphyrias to establish family histories and to help facilitate medial testing when physicians require a family history before ordering tests.
I am also very interested in compiling a surname list of ancestors of known and suspected Porphyrians for an online database.
I am not a medical researcher working for a pharmaceutical company or a university. I am a caregiver for an individual with AIP and the mother of a suspected AIP. This project is to aid persons, both those that I know and others that I do not, so that they will no longer be denied testing and ultimately treatment. It is also for documenting established family lines for the diseases in the US, Canada, and wherever else the ancestries take us.