Research Projects

You can help.

The patients and families can be helped by us. WE, healthy people, can provide insights into genetic mechanisms of rare diseases. Thank you for your interest in this research study. By answering the following questions you are contributing to important research to help find out more about why some people may never develop symptoms of porphyria.



 

First, please tell us who you are. ALL your information will be strictly confidential and only used to help the rare disease community. This study has been examined and aproved by XXX

Please fill in your legal first name:*
Please fill in your legal last name: *
What is your gender?: *
What is date of your birth? day/month/year: *


What is your self-identified ethnicity?
What is your birth country?


Please tell us any information related to porphyria.

Have you been diagnosed with porphyria? e.g. (Acute Intermittent Porphyria, ALA-D Porphyria, Congenital Erythropoietic Porphyria, Herditary Coproporphyria, Porphyria Cutanea Tarda, Protoporphyria, Variegate Porphyria)


Please tell us some information about how you live, which will help us to decode complex genetic determinants of rare diseases

Do you drink alcohol? How often?
Do you smoke tobacco? How often?
Do you exercise regularly? How often and what intensity?
Do you use drugs? What type and how often?
Are you exposed to toxic substances (i.e., treated lumber, lead paint, paint chips or dust, broken mercury thermometers or fluorescent bulbs, etc.) at home or work?
Do you live in an apartment or home built before 1978, or in a mobile home, boat, or RV?


Other relavent information:


Finally, please tell us your contact so that we can reach out to you.

email:
phone number: