A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

New Resource to Help Diagnose Rare Disease

Posted by | 12:52pm on Monday, September 20, 2010
screenshot of the website AIPorphyria.com

a destination to help undiagnosed AIP patients and their physicians identify symptoms consistent with AIP 

Can you imagine knowing you are ill but going several years before receiving a diagnosis? Unfortunately, this may be the case for some patients with Acute Intermittent Porphyria (AIP), a serious disease that is rare and may present a diagnostic challenge. AIP mimics many more common conditions. Lack of awareness by physicians can also delay diagnosis and management of the disorder. For some patients, this can lead to years of pain, confusion and emotional distress.

Siren recently collaborated on an informative website for a client specializing in rare diseases, providing a comprehensive resource on AIP (www.AIPorphyria.com) for patients, caregivers and physicians. The site also provides a destination to help undiagnosed AIP patients and their physicians identify symptoms consistent with AIP.

“For even some of the best minds in medicine, AIP can be puzzling,” says Desiree Lyon, Executive Director of the American Porphyria Foundation. “When the disease isn’t recognized, patients are often given medications that worsen their condition or undergo unnecessary surgeries, so bringing attention to AIP is critical.”

Educate, don’t sell
AIPorphyria.com is an example of one of Siren’s key principals: educate, don’t sell. Content on the site includes information on the signs and symptoms of AIP, testing for the condition, recognizing triggers and working with a physician. Information tailored for healthcare professionals provides detail on a variety of topics, including how to diagnose and suggestions on managing those with AIP.

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

View other posts from Wendy

4 Pingbacks/Trackbacks

    20 September 2010 at 6:09pm
    Siren collaborated on new site for ...
  • Eileen O'Brien
  • 20 September 2010 at 6:09pm
    RT @EileenOBrien: Siren collaborated ...
  • Rich Meyer
  • 23 September 2010 at 11:09pm
    New site launched for #raredisease ...
  • Frieda Hernandez
  • 30 September 2010 at 1:09pm
    RT @friedah03: New site launched for ...
  • Kathleen Starr, Ph.D
Siren Interactive
  • Siren Interactive
  • Rare Disease Relationship Marketing Experts
  • 626 West Jackson Blvd, Suite 100
  • Chicago, IL 60661
  • 312.204.6700
  • 866.502.6714 (Toll Free)
  • www.sireninteractive.com