Tired of being called a VAMPIRE, CRAZY or a DRUG SEEKER?
The perception of patients with porphyria won't change unless we make the change. In order to combat these issues we have to work together to make a difference in each other's lives to eliminate the stigma associated with this disease.
This campaign will help us create hope for all, help us share our stories more and eliminate the stigma associated with porphyria.
YOU have a VOICE. Let it be HEARD! We are #PorphyriaStrong
Your participation is needed in order for change to be made. The steps are listed below to participate.
EDUCATION is KEY!
- Develop a relationship with your physician.
- Encourage them to learn more about the porphyrias. Call the APF on 713.266.9617 or email Edrin at firstname.lastname@example.org and provide us with your physicians contact information (name and address) and we will get them a complimentary doctor packet sent to them.
- Educate your family members including your caregivers about your disease. Get them involved in your care.
- Utilize our downloadable Access to Care Toolkit
Here is the link: http://www.porphyriafoundation.com/content/aip-hcp-vp-access-care-toolkit
"Remember....Research is the key to your cure!"