How do I join?
The Contact Registry asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.
How does the Contact Registry Work?
Select one of the types of porphyrias below to join the Contact Registry for that porphyria:
- Communication of open recruitment for clinical studies of your disease
- Notice of opening of new clinical sites doing research on rare diseases
- Information on activities from affiliated awareness and advocacy groups