Rare Disease Day is Feb. 28

Stancliff at the NIH’s 2017 event.

Rare Disease Day takes place on the last day of February every year (Feb. 28 or 29 if a leap year). The objective is to raise awareness and knowledge by calling attention to rare diseases and their impact on patients’ lives. Statistics show 1 in 20 people are affected by a rare disease. Unfortunately, there is no cure for the majority of rare diseases and many go undiagnosed.

To show support, below, U.S. Pain Foundation has provided various ways to become engaged within your community or worldwide. U.S. Pain feels this day of recognition falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.[...]

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On Jan. 16, U.S. Pain volunteers and members were treated to a presentation, “How to effectively prevent and resolve insurance coverage issues,” with Demian Fontanella, JD, general counsel for the Connecticut Office of the Healthcare Advocate (OHA). The webinars occur on the third Tuesday of every other month at 1 pm EST.

OHA is an independent state agency that provides advocacy services for Connecticut health care consumers. In 2016, OHA helped over 7,000 consumers with specific issues and saved Connecticut them more than $11 million combined. (For a list of similar agencies by state, click here.)[...]

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Steinberg testifies in December.

Cindy Steinberg, U.S. Pain’s national director of policy and advocacy, testified twice at the Massachusetts State House in recent weeks on important pain policy legislation. On Dec. 19, she testified in support of a bill to ensure pain is properly assessed and managed in all health care settings. On Jan. 16, she expressed concern over some aspects of a bill that may go too far in restricting pain medications.[...]

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This month’s webinar will feature departmental updates and an informational presentation, “How to effectively prevent and resolve insurance coverage issues,” with Demian Fontanella, JD, general counsel for the Connecticut Office of the Healthcare Advocate (OHA). The webinars are open to volunteers and those interested in volunteering.

Fontanella will discuss tips for dealing with insurance coverage denials and how to get the best outcome. He’ll also delve into ways to prevent denials in the first place and avoid surprise bills.[...]

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Dear pain warriors,

Happy New Year! Instead of our usual newsletter, we thought we’d look back at our top 10 highlights of 2017. In 2018, we hope to do even more to fight for a better quality of life for all people with pain.

Before sharing some of our successes from this year, we wanted to spotlight one volunteer who went above and beyond these last 12 months: Michele Rice. We are pleased to announce that Michele has been selected as our Joselynn Badman Ambassador of the Year for 2017. You can read more about Michele and her inspirational efforts here.[...]

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U.S. Pain is proud to announce Michele Rice as 2017’s recipient of the Joselynn Badman Ambassador of the Year. This prestigious annual award honors a U.S. Pain volunteer who has gone above and beyond for the pain community. After an open nomination period, one awardee is is selected by a committee comprised of U.S. Pain staff members.

Rice has been a California ambassador since 2014 and was an INvisible Project participant in 2015, when she shared about her struggles with reflex sympathetic disorder. Since becoming an ambassador, she has continuously kept U.S. Pain information and educational materials at her doctor’s office and regularly hosts awareness tables during important campaigns like Pain Awareness Month and Rare Disease Day.[...]

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