Patient Empowerment • Hope • Informed Decision Making
As healthcare professionals working directly with patients, both my sister and I always believed strongly in creating environments that support patient empowerment, hope, and informed decision making. We then found ourselves needing to personally apply this approach when she was diagnosed with ocular melanoma.
Later, with this same perspective in mind, EyeMelanoma.org was established in her honor in 2011 as a website that focuses specifically on providing patients and their families with up-to-date online links to useful resources and to reliable information on this rare cancer ... an organized, calming counterbalance to the frequent clutter and information overload on the internet.
This U.S.-based website continues to grow and be updated every month, aiming to address the informational needs of both those newly diagnosed and those many years along. Website methodology includes:
- New ocular melanoma resources are added from trustworthy organizations around the world — primarily OM-related nonprofits, healthcare organizations, medical journal publishers, academic/medical centers, medical associations, and public health agencies. However, this information must be available in English so that it can be thoroughly vetted prior to adding.
- All resources are neutrally listed, either alphabetically or in date order. Descriptions are quoted directly from the written material provided on their websites. Also, EyeMelanoma.org does not accept any advertisements or sponsorships.
- Once listed, the resources and their links are re-verified throughout the year and are updated or removed as needed. The bottom of each page notes the date of the most recent addition or change.
- In order to highlight the latest information on medical-related topics, only ocular melanoma educational videos, conference presentations, and medical journal articles created or published during the past two years stay listed on this website each month.
The EyeMelanoma.org website is very much meant to be a place of encouragement that highlights the entire OM community. When using the links to organizations, support services, educational videos, patient guides, medical journal articles, conferences, clinical trials, and the many other types of resources compiled here, hopefully you will be heartened by the crucial and expanding work being done in ocular melanoma research, treatment, and support by truly dedicated people.
Wishing everyone strength and healing,
Erica Barrett, MOT, MBA
In loving honor of my sister Paula
