advocacy The Ultimate Patient Guide: Tips and Tricks You Never Knew Living with a chronic illness can be painful, frustrating, and exhausting. The Ultimate Patient Guide is a series of tips, tricks, and resources from patient advocate Alison Rothbaum aimed to empower people everywhere with the tools necessary to navigate their healthcare journey.
Farber Disease Inside a family's fight against rare disease Doctor after doctor, specialist after specialist, seemed to concur on only one point: They had never seen anything like what was happening to Santi.
Researching a new therapy for an ultra-rare disease: A look into the science of Enzyvant with Dr. Alex Solyom, senior medical director We were lucky enough to have Dr. Alex Solyom join us for the pod. Dr. Solyom is the senior medical director at Enzyvant, where he and the team research a new therapy for an ultra-rare disease called Farber disease.
Farber Disease Genetic Testing Q&A Genetic testing is “a type of medical test that identifies changes in chromosomes, genes, or proteins."
Patients Have Power Advocating for Rare Disease in Mississippi A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.
Patients Have Power Diversity in Clinical Trials In this episode, we tackle the topic of increasing inclusivity in research. We're talking to three amazing women from the Accelerated Cure Project for MS. We cover the MS Minority Research Engagement Partnership Network.
Patients Have Power Beyond Sweat: How Hyperhidrosis Shapes Everyday Life Maria Thomas joins Lilly in honor of Hyperhidrosis Awareness Month to talk about her “life as a puddle” and inspiring advocacy work.
Patients Have Power Healthcare is on the ballot, with Matt Cortland Matt Cortland joins Aaron to talk about the upcoming midterm election and what's at stake for patients.
Patients Have Power Chris Snider from Tidepool.org Chris Snider, Type 1 diabetes advocate and Community Manager at TidePool joins Lilly on the Patients Have Power podcast.
Clinical trial guides How you can make an impact in medical breakthroughs Clinical research offers hope for many people, because it helps us find better treatments. Clinical trials are the core of all medical breakthroughs, and volunteer participants are the most important part of any study.
Patients Have Power Learning to advocate for equitable healthcare: How to make your voice heard In this episode, we speak with Peter Morley, a self-described "accidental advocate" who, despite living with multiple chronic conditions, fights on behalf of all Americans for fairer healthcare access.
Cancer Understanding targeted therapies for cancer Learn about targeted therapy, a type of treatment that targets specific genes or proteins in order to stop the growth and spread of cancer.
inflammatory bowel disease New treatments for inflammatory bowel disease (IBD) in clinical trials Advances in our understanding of Crohn’s disease and ulcerative colitis have led to research that explores new pathways for treating inflammatory bowel disease (IBD). Here are some of the notable new types of therapies that are being evaluated in clinical trials.
13 Questions to ask to find the right doctor for you There are many different ways in which people choose their doctors', and there can be serious consequences from selecting one that's a bad fit. Here are a list of questions to evaluate when you're trying to find a new physician who is knowledgable, respectful, and works well together with you.
healthcare The Affordable Care Act: What is at stake Everything at stake in this latest fight over the Affordable Care Act, from pre-existing condition protections to affordable access, and what patients can do to fight for their care.
Patients Have Power Writing as Therapy: Learning to Cope with Chronic Illness In this episode, we speak with Arthritis Ashley - a writer, patient advocate, and a powerhouse voice for those who live with chronic conditions, about her journey and ongoing projects.
Clinical trial guides A step-by-step guide: Finding pediatric clinical trials for your child Here are steps you can take to find pediatric clinical trials for your child, from learning about studies to connecting with the right physicians.
Clinical trial guides Informed assent: How to include children in the decision to join a clinical trial Even though parents and guardians must consent, or give permission, for their child to join a study, it’s important for children, when able to do so, to have a part in making a decision to join a study.
3 tips on how to be a caregiver for your child: Eat The Cake First When my first daughter got sick — I kept looking for the "What to Expect When You’re Expecting” book for parenting a sick kid. Here are 3 tips on being a caregiver for your child that I've learned from years of caring for my chronically ill children.
Patients Have Power Living with Ehlers-Danlos: From a Hysterectomy to a Tipped Heart Molly talks to Lilly about life with rare diseases, getting a hysterectomy in your 20s, and what happens when you heart is in the wrong place.
Ulcerative Colitis Steps to take when your doctor doesn’t listen to you As a patient with a chronic illness, I know first-hand what it feels like when a doctor’s office isn’t listening to you. Using my experiences, I’ve come up with a step-by-step guide on actions you can take to advocate for yourself when you feel your doctor isn’t hearing you.
Clinical trial guides How clinical trial participation is regulated for safety While like any treatment option there are inherent risks for participating in a study, it's essential to understand both the risks and how policies keep patient safety a top priority in clinical trials.
Patients Have Power When Arthritis is Misdiagnosed as Depression Savannah was told she had depression...when, in fact, she was living with arthritis. Now, she uses her condition as an opportunity to give back to research through participation in clinical trials, patient advocacy, and sharing her story.
Psoriasis Are there natural therapies for treating psoriasis? A recent study aimed to evaluate a natural topical treatment for psoriasis. The treatment involved an ointment which was created from a mixture of propolis (50%) and aloe vera (3%). Read about the results of the treatment for treating mild or moderate psoriasis.
Crohn's Disease How Vitamin D affects Inflammatory Bowel Disease Recent research suggests that vitamin D deficiency may have an impact on the development of IBD, the severity of the disease, and whether or not the disease stays in remission. Learn about the results and how to make sure you are receiving enough vitamin D.
