Advocacy Information
The American Porphyria Foundation: www.porphyriafoundation.com
4900 Woodway, Suite 780
Houston, TX 77056-1837
Toll free: 866-APF-3635
Telephone: 713-266-9617
Fax: 713-840-9552
National Organization of Rare Disorders (NORD): www.rarediseases.org
Social Services Information:
Social Security Disability Benefits: www.disabilityinfo.gov
Lundbeck Reimbursement Support Program (a free service available to patients, caregivers, medical billing staff, healthcare providers, and others who have questions about insurance coverage and reimbursement-related issues): Phone: 866-209-7604; Fax: 866-209-7599; E-mail: LundbeckReimbursement@covance.com
HealthWell Foundation (a 501(c)(3) 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): www.healthwellfoundation.org
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): www.campdiscovery.org
Mercy Medical Airlift: mercymedical.org
MedicAlert Foundation: www.medicalert.org
Sun Precautions Online (sun protective clothing): www.sunprecautions.com/shop.asp
