patient advocate

A Family’s Journey from Asthma to Depression to Advocacy

Posts Tagged ‘patient advocate’

A Family’s Journey from Asthma to Depression to Advocacy

Laura Marotta was just trying to treat her son’s asthma. Instead, the asthma medication led to extreme adverse side effects, including depression, anxiety, and hallucinations. My Gene Counsel’s President and CEO, Ellen Matloff, had the opportunity to talk to Laura and her son, Nicholas, about their journey from asthma to depression to finally finding their way…

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Cancer ‘Fight’ Metaphor, To Continue or End?

Is it time to put the cancer ‘fight’ metaphor to rest once and for all? Patient advocates and genetic counselors share their insight. Is it time to put the cancer 'fight' metaphor to rest once and for all? #Advocates, please chime in! #Gencsm #BRCA #Lynchsyndrome #patientadvocates #cancer #patients #PatientExperience — Ellen T. Matloff (@MyGeneCounsel) May…

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5-year BRCA SCOTUS Anniversary

Today, June 13th, 2018, marks the 5 year anniversary of the Supreme Court of the United States’ Association for Molecular Pathology v. Myriad Genetics case regarding the BRCA gene patent. The result was a unanimous decision, genes could not be patented as they occur naturally. We reflected back on this day, how far we have…

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Rare Disease Day 2018

Rare Disease Day is an opportunity to raise awareness for 7,000+ rare diseases and the 30 million Americans who are affected by a rare disease(s). The theme for this year’s Rare Disease Day is “Research” and the important role that patients play in gaining an understanding of rare diseases and developing innovative treatments or cures. This…

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