New Initiative Sheds Light on an Often Undiagnosed Condition Associated with Parkinson’s Disease and other Nervous System Disorders

In partnership with patients, caregivers and advocacy groups, Lundbeck announced today the launch of nOH Matters, an initiative for people impacted by neurogenic orthostatic hypotension (nOH). Caused by an underlying neurodegenerative disorder, nOH is a sustained drop in blood pressure upon standing that can affect people with certain nervous system disorders, including Parkinson’s disease (PD), multiple system atrophy (MSA) and pure autonomic failure (PAF).1 Symptoms such as dizziness or lightheadedness, passing out and falling are often experienced by people living with nOH, but few resources have previously been available.2 Coinciding with PD Awareness Month this April, Lundbeck announces the launch of nOH Matters to help patients and their care partners recognize symptoms, discuss them with their doctor and share their personal experiences with others living with nOH.

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In addition to a partnership with people with nOH and their family and friends, nOH Matters is the result of collaboration among leading patient organizations, including MSA Coalition, National Parkinson Foundation, Davis Phinney Foundation for Parkinson’s, American Parkinson Disease Association, the Michael J. Fox Foundation for Parkinson’s Research and the Parkinson’s Disease Foundation, alongside Lundbeck. Educational information will be available at national and local PD and MSA events and support groups, and a website called www.nOHMatters.com is now available featuring educational tools and resources for patients and their families, including:

• Symptom Checker: A checklist to help people see which symptoms of nOH they may be experiencing. The form can be used at an appointment with a healthcare provider to have a discussion about symptoms.
• Find a Doctor: A resource to find a nearby nOH specialist who can help diagnose and manage nOH.

As many as one in five of those living with PD, and four in five of those living with MSA, may also be experiencing the dizziness, lightheadedness and other signs of nOH. However, these symptoms are often considered “just” another characteristic of the underlying neurodegenerative disorder, even though nOH is a separate and often manageable condition.

“When I started experiencing symptoms of dizziness and lightheadedness, I struggled to describe the sensations to my doctor,” said Jody Wright, a person living with PD and nOH and a member of Lundbeck’s group of patients whose insights and input led to the creation of the initiative. “Now that I have a better idea of what’s going on and how to manage my symptoms, I’m excited to share my story and be part of a community that’s helping others learn more about nOH.”

A new nOH Matters Facebook page also allows patients and families to get regular updates about nOH, discover community events and activities, share personal experiences and encourage each other.

“We’ve heard stories from people with nOH who went many years suffering from symptoms without a diagnosis because there has been very little information available about the condition,” said Katie Moser, Manager of Advocacy and Patient Support at Lundbeck. “Our goal with nOH Mattersis to provide awareness, information and tools that help people living with nOH and their care partners recognize the signs and elevate symptoms with their healthcare team.”

For more information, please visit www.nOHMatters.com and www.facebook.com/nOHMatters.

About Lundbeck

Lundbeck is a global pharmaceutical company specialized in psychiatric and neurological disorders. For more than 70 years, we have been at the forefront of research within neuroscience. Our key areas of focus are depression, schizophrenia, Parkinson's disease and Alzheimer's disease.

An estimated 700 million people worldwide are living with psychiatric and neurological disorders and far too many suffer due to inadequate treatment, discrimination, a reduced number of working days, early retirement and other unnecessary consequences. Every day, we strive for improved treatment and a better life for people living with psychiatric and neurological disorders — we call this Progress in Mind.

Our approximately 5,300 employees in 55 countries are engaged in the entire value chain throughout research, development, manufacturing, marketing and sales. Our pipeline consists of several late-stage development programs and our products are available in more than 100 countries. We have research centers in China and Denmark and production facilities in China, Denmark, France and Italy. Lundbeck generated core revenue of DKK 14.6 billion in 2015 (EUR 2 billion; USD 2.2 billion).

In the U.S., Lundbeck employs nearly 1,000 people focused solely on accelerating therapies for brain disorders. With a special commitment to the lives of patients, families and caregivers, Lundbeck U.S. actively engages in hundreds of initiatives each year that support our patient communities.

To learn more, visit us at www.lundbeckus.com and connect with us on Twitter at @LundbeckUS.

References

1. Goldstein, David S. et. al. Neurogenic Orthostatic Hypotension: A Pathophysiological Approach. Circulation. 2009;119:139-146.

2. Hauser, Robert A, et. al. Droxidopa for the short-term treatment of symptomatic neurogenic orthostatic hypotension in Parkinson’s disease. Movement Disorders. 2015:30;646-654

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