Mission Statement

This organization has been created:

	To facilitate research for a cure for all porphyrias, and research for treatments to alleviate suffering and symptoms while waiting for a cure.
	To disseminate information about the family of illnesses which constitute porphyria to benefit the sufferers, family and caretakers, and to educate the medical community and the general public about this rare disease.
	To advocate in a variety of ways for the human needs of those who are ill with porphyria.

Please note that we currently run an email support group using Yahoo Groups.  You can subscribe to our support group by clicking on the following link:

Subscribe to our email support list on Yahoo Groups

100% Volunteer Organization

All of the members of our organization are volunteers who donate their valuable time and effort to find a cure for Porphyria.  We were formed as a group of People with Porphyria, their family, friends and care givers.  Our Medical Advisors are the local primary care physicians who see us on a daily basis and treat us for this horrible disease.  Our organization is arranged to minimize our costs and to maximize the money that we donate to research for a cure.  While some other Porphyria organizations make donations to research for new treatments, our donations are limited to researchers looking for a cure.  We also require that our researchers be free of any associations with pharmaceutical and/or chemical companies.  Those pharmaceutical and/or chemical companies have a vested interest in the same drugs and chemicals that harm us and they may not act in our best interest due to those conflicts.