rare disease

A Family’s Journey from Asthma to Depression to Advocacy

Posts Tagged ‘rare disease’

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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Trailblazing Genetic Counselors Episode 18: Patient Experience Part II

This is the eighteenth installment in our series, “Trailblazing Genetic Counselors”, in which we highlight genetic counselors who are pioneers in the field. Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling. Genetic counseling is a rapidly growing field offering professionals a wide range of…

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#NSGCGenePool Second Annual Tweetchat

The National Society of Genetic Counselors (NSGC) has launched the second year of its NSGC Digital Ambassador Program. This program highlights advocates and providers in the genetics field who raise awareness about the role of genetic counseling and promote their shared interest across their networks. The group consists of 15 influencers, including our President/CEO, Ellen Matloff,…

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Trailblazing Genetic Counselors Episode 16: Canadian Genetic Counsellors

This is the sixteenth installment in our series, “Trailblazing Genetic Counselors”, in which we highlight genetic counselors who are pioneers in the field. Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling. Genetic counseling is a rapidly growing field offering professionals a wide range of…

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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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Genetic Counselors and You Webinar Series: Rare Diseases

The National Society of Genetic Counselors (NSGC) has introduced a new webinar series, “Genetic Counselors and You” hosted by genetic counselors from a variety of fields. Webinars are live and the recording can be accessed later if you miss the streaming. Registration is free and open to the public. The most recent webinar, “Rare Disease:…

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