Patient Advocate: This Could Be You!

The Global Healthy Living Foundation wants to bring out the advocate in everyone living with a chronic condition. By mobilizing and activating patients and their families, within their local community, we are able to improve access to care at a national level. This is how we improve health outcomes. This is how we stay healthy.

GHLF brings rare disease advocates together

On April 21-22, 2012, the Global Healthy Living Foundation put together its second roundtable meeting to benefit small rare disease advocacy groups. The goal of the event was to help these groups network and share best practices. The representatives learned from advocates and healthcare professionals working with the rare disease community how to be more successful in identifying and supporting people who have their disease.

Watch this short video and meet the event participants. Listen to them speak about how they learn to be more effective and how we can all work together to lessen the isolation that comes from living with a rare disease all alone.

CreakyJoints member advocates for medication access in ND

Brenda Kleinsasser was diagnosed with rheumatoid arthritis (RA) more than 20 years ago. After 11 years, she can administer her Enbrel biologic with ease. But she worries about the day she might be forced to use a different medication.

WATCH: Pneumonia Vaccine Caught in CDC Maze

GHLF President Seth Ginsberg sits down with WNBC’s Chuck Scarborough to discuss how the CDC’s Advisory Committee on Immunization Practices failed to approve FDA-approved pneumonia vaccines for the 42 million Americans aged 50-65.

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WATCH: Join the Patient Advocacy Institute

If you have ever been denied coverage or have been forced to jump through hoops to receive treatment for a chronic disease, consider sharing your story with us so that we can help others. GHLF’s Patient Advocacy Institute is vehicle for people who want to use their experiences to educate the public about the need to protect coverage and improve access to care. Let your voice be heard, and share your story with us.

Watch the video below. (0:50)

WATCH: GHLF Co-Founder at Bio Convention in D.C.

Global Healthy Living Foundation co-founder Seth Ginsberg attended the 2011 Bio International Convention in Washington, D.C., an event bringing together researchers, physicians, and patient advocates to discuss and learn about new advances in healthcare practices and medications.

Watch his interview with Newschannel8 below. (7:00)

WATCH: GHLF Co-Founder Appeals to NY Governor

Seth Ginsberg explains what we must do to save Medicaid and Prescription Medication Coverage in New York State.

Watch his interview with NBC4 below. (4:00)