Patient Support and Advocacy Groups

The patient advocacy group specializing in the porphyrias is here to help you. They are devoted to providing support, resources and services for patients and families. Join this group to help yourself, your family, and other patients. Membership is free.

The United Porphyrias Association (UPA)

The United Porphyrias Association (UPA) is proud to partner with the physicians of the Porphyrias Consortium and to support porphyria patients. UPA is committed to improving the quality of life of the porphyria patient community and is focused on advancing disease awareness, research and therapies. Please contact United Porphyrias for support! info@unitedporphyrias.org or 800-868-1292.

Social Services Information

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

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

Alnylam Assist

Alnylam Assist® offers personalized, comprehensive support for patients throughout treatment with GIVLAARI™ (givosiran). For questions about navigating insurance and getting started on treatment or to learn more, visit Alnylam Assist® at AlnylamAssist.com*
Or Call: 1-833-256-2748
Monday-Friday, 8 AM-6 PM ET

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

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

Provides charitable air transportation for those in great need.

MedicAlert Foundation

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

Sun Precautions Online

Sun protective clothing.

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

Patient Advocacy