Clara Guides

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.

Rheumatoid Arthritis

Is stem cell therapy effective for treating arthritis?

Many doctors are interested in using stem cells to treat a variety of conditions, including arthritis. Stem cell therapy is being evaluated in clinical trials for arthritis as an alternative to knee replacements, biologics, and more.

Patients Have Power

Life With Hypertrophic Cardiomyopathy

Leilani is an advocate in the transplant and chronic illness community. She stopped by the Clara offices to talk about her experience receiving a heart transplant, what drives her to her advocacy, and how patients need to be treat like the user of any healthcare system.

Patients Have Power

Breaking down the fight over pre-existing conditions and Right to Try

Lilly and Aaron break down a renewed effort to undermine the Affordable Care Act by stripping out the legislation's protections for those living with pre-existing conditions and discuss the newly passed Right to Try legislation.

Rheumatoid Arthritis

A new implant might provide an alternative treatment for Rheumatoid Arthritis

The treatments used for rheumatoid arthritis today can be very expensive and have serious side effects, but new bioelectric therapies are aiming to change that.

Rheumatoid Arthritis

Sex, Pregnancy Remission, & More: Observational Studies Galore!

Rheumatoid Arthritis

Outside the box: Arthritis clinical trials that don't explore new drugs

Learn about new arthritis clinical trials involving treatments that are not drugs, including new exercises, stem cell therapy, diets, and more!

Patients Have Power

A Doctor's Quest to Fight Farber Disease

Lilly sits down with Dr. Solyom, Senior Medical Director at Enzyvant to discuss his work with pediatric patients and their mission to bring treatments to market for patients living with Farber disease, a rare, metabolic disease often misdiagnosed as JIA.

Crohn's Disease

Food additives you may want to avoid with Crohn's Disease

A recent study evaluated the presence of specific food additives in foods commonly eaten by pediatric Crohn's patients. The findings aim to influence future patient education on what foods or additives should be avoided to prevent disease activity in individuals with Crohn's.

Patients Have Power

Life With SJIA: Six Hip Replacements & Counting

In this episode, I sit down with Anna Evangeline - aka Six Hips - about advocacy and her own health journey. Anna details her multiple surgeries, the anger that she still feels about the things that have happened, and how honesty and raw storytelling helps spread stories more effectively.

Patients Have Power

Cancer Saved My Life

In this episode, I sit down with Michele Rhee, Enzyvant’s Head of Patient Affairs. Michele’s road to patient advocacy involves a cancer diagnosis, a collapsed lung, a heart tumor, tears shared with her mother, and a fight to get the treatments that she knew she needed.

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