Patient Support and Advocacy Groups

Patient advocacy groups specializing in porphyrias are here to help you. They are devoted to providing support, resources and services for patients and families. Join these groups to help yourself, your family, and other patients.

 

Advocacy Information

American Porphyria Foundation

American Porphyria Foundation
www.porphyriafoundation.com

National Organization of Rare Disorders (NORD)

National Organization of Rare Disorders (NORD)
www.rarediseases.org

Social Services Information

Social Security Disability Benefits

Social Security Disability Benefits

Helpful resources on topics such as how to apply for disability benefits, find a job, get health care or pay for accessible housing. You can also find organizations in your community to help you get the support you need.

Recordati Patient Support Program

Recordati Patient Support Program

Free service available to patients, caregivers, medical billing staff, healthcare providers, and others who have questions about insurance coverage and reimbursement-related issues.
866-209-7604

HealthWell Foundation

HealthWell Foundation

Non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.

Camp Discovery

Camp Discovery

Fun for kids with CEP, EPP, and HEP—sponsored every year by the American Academy of Dermatology, For young people with chronic skin conditions, a week of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun.

Mercy Medical Airlift

Mercy Medical Airlift

Provides charitable air transportation for those in great need.

MedicAlert Foundation

MedicAlert Foundation

Emergency medical information service provides identification bracelets, and 24hr-accessible computerized medical files to medical personnel.

Sun Precautions Online

Sun Precautions Online

Sun protective clothing.