This is the third in a series of blog articles detailing resources concerning rare diseases. Searching the Internet for these resources can be frustrating and it can be an emotional experience—and not in a good way.
Where we’ve had experience with any of these resources, I’ve tried to give my unbiased opinion and experiences—both good and bad.
The National Organization of Rare Diseases (NORD) is non-profit organization dedicated to patient advocacy who are afflicted with rare diseases. They offer a wide-range of services and
with the goal of being a hub for those with rare diseases.
The website is professional and easy to navigate; all throughout the site NORD's vision and mission are clearly communicated:
A national awareness and recognition of the challenges endured by people living with rare diseases;
A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;
Access for all patients to the diagnostics and therapies that will extend and improve their lives.
A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.
Two key areas that searchers should pay attention to:
- The Rare Disease Database is a searchable database providing information on each rare disease. The language is meant for the layperson and is easily accessible. Most entries also list other organizations to go for help, as well as potential treatments.
- Patient Assistant Programs lists various programs to help patients acquire medications that they might not otherwise be able to afford. There is also a page on other financial assistance programs.
Our Experience: Unfortunately, I don't believe we really used NORD's resources--we were fortunate that the hospital staff and our insurance put us in touch with those resources. Without a doubt though I highly recommend that the site be one of the first to look after receiving a rare disease diagnosis.
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