Resource of the Day: NORD

National Organization for Rare Disorders

Many patients with rare diseases lack access to resources that allow them to understand their condition and treatments. Healthcare providers also lack access to information regarding treatments. Since many of the medications used to treat these conditions are fast tracked to get on the market, there is not much time for providers to become familiar with these medications.

The National Organization for Rare Disorders (NORD) provides resources for both patients and healthcare providers that allows them to have a better understanding of treatments and conditions.

For patients:

NORD provides an introduction to patients about specific rare diseases. They also have a video library where patients can watch educational videos and patient experience stories. This allows the patient to feel at ease knowing that there is someone else sharing their journey.

In addition, NORD provides information on patient assistance programs and financial assistance. These medications can be extremely costly and can cause a huge burden on the patient.

For caregivers:

NORD provides resources to healthcare providers enabling them to provide better care to their patients.

Caregivers can access information on ongoing and upcoming clinical trials on a specific disease state or request information for a research grant if they choose to do their own research. In addition NORD provides a continuing education tab for caregivers to extend their knowledge and learn about the new medications as they come on the market.

Every year there are more and more medications hitting the market. NORD is a great resource for both patients and healthcare providers that can be used to fully understand a certain rare disease and the treatment options available.