Featured are four people — with their own unique health conditions — that are making the best of the quarantine and pandemic. Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues…
Patient Advocates, Patient Leaders
- February 4, 2020
- Tagged as: advocacy, autoimmune condition, caregivers, chronic fatigue syndrome, chronic illness, chronic pain, collagen six intermediate congenital muscular dystrophy, fatigue, fibromyalgia, Limb Girdle, lupus, Lyme disease, muscular dystrophy, neuromuscular disease, patient advocate, patient leader, respiratory, respiratory health, ventilator
What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf…
It’s not that easy being RARE…
- February 27, 2019
- Tagged as: advocacy, myotonic dystrophy, rare disease, research
February 28 is International Rare Disease Day. There are over 6,000 rare diseases or disorders with 80% having genetic origins. Global events are planned to draw attention to the need for medical research. This brief,…
How do you give back? In previous podcast episodes we heard from Amy – a music philanthropist – who sings to raise money for causes she believes in, Chris – a software engineer – who…
Maybe you have a firm grasp on what being an Advocate is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best…
According to Wikipedia, a patient advocacy organization is, “an area of specialization in health care concerned with advocacy for patients, survivors, and carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific…
