Just a phone call away

| Angie Thies

The NPF advocacy team is holding a series of informative calls this summer. These two calls are designed to showcase the components behind our ongoing legislative and advocacy work.  

The June call featured the new psoriasis disease guidelines with the August call set to feature the Patient Navigation Center. Anyone with an interest in our advocacy work or a curiosity to learn more is encouraged to register and dial in. 

In 2016, the American Academy of Dermatology and NPF embarked on an ambitious project: the first updating of psoriasis treatment guidelines in a decade. The guidelines were developed by a team of dermatologists, a cardiologist, a rheumatologist and patient representatives. Recently, the first two guidelines of six – for biologics and comorbidities – were released. 

“The AAN teleconference was a fantastic opportunity for the advocates to meet. I was honored to hear their stories and enthusiasm. I was also excited to share the key points of the first two AAD-NPF psoriasis guidelines," says Stacie Bell, Ph.D., NPF vice president of research and clinical affairs, who was on hand for the June call. 

“The guidelines provide a valuable tool for physicians and patients for psoriasis management and treatment and raising awareness about comorbidities and treatment options. The guidelines are evidence-based and highlight the roles of the dermatologist, education, the patient-care provider relationship and comprehensive care.”

In 2016, Advocacy Action Networks were formed for three regions, West, Central and Eastern. The monthly calls serve as a place where volunteers are encouraged to share what’s happening in their state – all relevant legislative or political activity – while staff share opportunities for volunteers to connect with local efforts. 

“As the co-chair of the Central Advocacy Action Network, I love our monthly CAAN meetings and learn so much while getting to know great people. We know that summer months are busy, and by the nature of psoriatic disease, many of us may feel isolated. We saw an opportunity to bring everyone together during the summer months to learn and meet others working to advance legislation. I’m so glad we did! The first call was an overwhelming success and I look forward to the next one!” – Cynthia Heaton, Iowa

Aug. 15 advocacy call

The August call, second in the summer series, will feature the Patient Navigation Center. The PNC provides free and personalized assistance to anyone impacted by psoriatic disease, including families and caregivers. Each person who contacts the PNC (via chat, email or phone) is matched with a navigator who gets to know your personal disease challenges and arms you with tools to overcome these barriers, such as finding dermatologists and rheumatologists, appealing insurance denials, finding financial assistance and more.  

The PNC is a critical partner for the advocacy team. Navigators are especially helpful during open enrollment time as many individuals consider their insurance options.  

“It just made sense to feature the PNC during our August call,” says Amy Prentice, associate director of state government relations for the advocacy team. “We know that many individuals will be making decisions about insurance enrollment this fall. We hope to help in that process by sharing NPF resources and offering support to our community as they try to make the best choices possible.” 

Please join us for our next call, Aug. 15 at 7 p.m. CST, to learn more about the PNC and the resources available to you as you consider your options during open enrollment. The call is open to anyone with an interest in the topic or a curiosity about our ongoing advocacy work. Call-in information will be shared closer to the date. 

Contact [email protected] to learn more. Don’t forget to sign up to receive important advocacy email updates. You can also follow us on Twitter: @NPF and #NPFadvocacy.

Editor’s note: Julia Boles, NPF advocacy coordinator, contributed to this story.

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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