A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, April 11, 2013

Rare Disease Webinar 5/1/13 - Affordable Care Act changes and Rare Diseases

Global Genes will be hosting a series of webinars in 2013 geared towards educating and empowering our RARE community.

Essential Health Benefits: How this provision under the Affordable Care Act could affect access to rare disease therapies and treatments

May 1, 2013 – 11:00 am Pacific Time
Register today!

Do you know how the recently passed Affordable Care Act (often referred to as Obamacare) affects you and your family? Do you understand how an important segment in this ACA called “Essential Health Benefits” may alter your access to the therapies and treatment you need? At this webinar, our panelists will explain the changes that are about to be put into effect, and more importantly, how these changes will affect our entire rare disease community.

Several issues specific to the rare community will be discussed including:
* Will these changes in healthcare ensure that patients are still able to meet with an adequate number of specialists?
* How will the Health and Human Service Department (HSS) determine which medical services are unnecessary and inappropriate and which are necessary and high-quality?
* How will HHS ensure that explicit details on prescription drug coverage remain readily available for patients, so they can make informed decisions while selecting a healthcare plan?
* Most importantly, how will you know with certainty which health plan is best for you after all of these healthcare changes are put into effect?

Please join us on May 1st, 2013 at 11 am Pacific Time to learn more about this important provision of the Affordable Care Act and how it could potentially affect you and your family. We will also discuss issues unique to the rare disease community that may seem unclear since the HHS final rule.



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