patient advocacy

A Family’s Journey from Asthma to Depression to Advocacy

Posts Tagged ‘patient advocacy’

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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GenomeWeb Quotes Ellen Matloff’s Forbes Article

Our CEO/President, Ellen Matloff, wrote a Forbes piece that was featured by GenomeWeb. It recaps her argument that Facebook needs to regain the trust of patient groups that had relied on its closed groups for support. She explains these groups provide people who “desperately need the support, advice, and friendship of others experiencing the same things.” But, a…

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Angelina’s Impact: Advocates Share

It’s been five years since Angelina Jolie announced to the world she carries a BRCA1 mutation and had a prophylactic double mastectomy to lower her risks of developing breast cancer. Below advocates reflect on the impact she has made by sharing her story and starting widespread conversation about hereditary cancer and prevention. “Angelina’s efforts 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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Blazing The Trail: Why Genetic Counselors Must Lead The Genomics Revolution

To celebrate the first Genetic Counseling Awareness Day (November 9th), our CEO/President, Ellen Matloff, presented as the inaugural speaker for The National Society of Genetic Counselors (NSGC) webinar event. Here’s a recap of a few career challenges she shared and her call to action for fellow genetic counselors. You can watch the full webinar on…

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