Online Community Launched for Parkinson Disease Patients, Caretakers

A new online community from the American Parkinson Disease Association provides informational and emotional support for patients and their caretakers.

Associations offer online communities for any number of reasons, including networking and information sharing, education, and leadership support. The American Parkinson Disease Association’s new online community leverages these benefits to provide personal connections and information to those with the disease and their caretakers.

The online community was created in partnership with Smart Patients, which provides online community services to patients and their families struggling with illnesses. APDA’s portal is free and open to anyone but is specifically targeted at those within the Parkinson’s community.

This is a way that you could learn from others on how to be your own best advocate.

“One of the things that’s very important when you have a disease like Parkinson’s is that you really need to advocate for yourself,” APDA Vice President of Programs and Services Robin Kornhaber said. “And this is a way that you could learn from others on how to be your own best advocate, and it also can provide you with updated information and the support you need.”

Those who sign up to join Smart Patients can ask questions, offer answers, and access public conversations on information about treatments, medications, and tips to improve patients’ quality of life. In addition, APDA provides information on clinical trials and other educational resources through the portal.

“Being a community, it’s a way to connect and talk to people in a way that’s social and also to get education and information from one another,” Kornhaber said.

When surveying the Parkinson’s community, APDA found that people were more regularly seeking information online, and that the web was, in fact, the second-most-common place to seek information after support groups. The online community helps APDA adapt to the changing trend, while continuing to share information through support groups, local chapters, and referral centers.

“We want to be everywhere where Parkinson’s people are, and we thought this would be a great opportunity to capture those people who want to get their information on the web,” Kornhaber said.

She explained that the online community will especially benefit those who live in rural communities without in-person groups, are caregivers who cannot attend a support group, or are patients who cannot leave home.

“This is a disease that can be very isolating—that people, particularly people who are more advanced, are sometimes embarrassed by their symptoms … or the ability not to control or know when a symptom is going to happen,” and may be hesitant to go out in public, Kornhaber said. “What we like about this community is that people can be themselves because no one can see them.”

The portal can also complement other services patients and caregivers are already using and be an extra resource that is available at all hours.

“This innovative opportunity will further a dialogue to nurture the PD community, provide socialization, education, and critical access to information—and will allow us to expand our reach across the country,” Kornhaber said in a press release.

(American Parkinson Disease Association screenshot)

Alex Beall

By Alex Beall

Alex Beall is an associate editor for Associations Now with a masters in journalism and a penchant for Instagram. MORE

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