I’m grateful to have solid footing when it comes to the specialized level of care I’ve received for Duchenne muscular dystrophy (DMD). However, for millions of people who are in the dark about their rare disease, it can be a daunting task to find answers that could improve their quality of life.
A hub for uncovering some of these solutions is the National Organization of Rare Diseases (NORD). NORD was launched in 1983 by a group of patients and caregivers who were pushing for the Orphan Drug Act that was passed by Congress, which incentivizes the production of new drugs for rare diseases.
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There are a plethora of avenues they take in striving to enhance the well-being of individuals living with rare diseases and those who care for them. Additionally, they offer a platform for advocates, researchers, physicians, and corporate backers, with the goal of giving each stakeholder in these efforts a seat at the table.
There are numerous ways that NORD specifically provides assistance for patients and caregivers. Databases are in place to locate key information and resources pertaining to over 1,200 rare conditions. When I searched DMD, several organizations I know well were listed.
There are several options NORD provides that can directly impact the care someone receives. A list identifies NORD Rare Disease Centers of Excellence that offer optimal treatment of rare conditions. My hospital, Cincinnati Children’s, is one of them. Financial support through assistance with insurance premiums and copays is available. There are also funds for caregiver respite.
Various methods are utilized by NORD to influence policymaking. They continue to lobby for the Orphan Drug Act. There are also Rare Disease Advisory Counsels (RDACs) in over 20 states that make recommendations to state leaders about critical issues.
If you would like to get involved yourself, NORD can help with that too. They have a runner fundraiser group called NORD Running for Rare. There are universities with NORD-affiliated chapters as well.
I’ve given only a broad summary of the potentially life-saving services that NORD and other rare disease orgainizations offer. I honestly don’t know If I would be here today if it wasn’t for the specialists that go above and beyond to give me the best care possible. So I know just how important these resources can be. If you or someone you know is feeling lost in their rare disease journey, this is a great source to check out.