Receiving a cancer diagnosis is one of the most difficult experiences anyone can face. But for rare cancer patients, there’s an additional layer of unknowns, because most doctors may not have much experience with their specific disease. Kristen Palma Poth and Jim Palma, president and executive director of TargetCancer Foundation, share their best advice for newly diagnosed rare cancer patients.

When Paul Poth received a rare cancer diagnosis at age 37, it kicked off a series of events that would change the course of treatment for countless other patients. Read on to learn why Paul started TargetCancer Foundation and what is the organization’s main mission.

How should parents of children experiencing meltdowns deal with clueless and judgmental onlookers? What are the best methods to alleviate motion sickness when your child might already be on a cocktail of drugs? Traveling Different answers these and many other questions parents may have when traveling with their children.

I can clearly remember the day we finally received his diagnosis. It was 2019, and my son was 14 years old. We had already been treating seizures and developmental delay for years. However, I was not prepared for the actual diagnosis.

Here are 4 tips to set up your smartphone so you’re prepared for a sudden trip to the ER.

This episode of the DNA Today podcast discusses how propionic and methylmalonic acidemia affect the body, the goal of HemoShear’s investigation therapy (HST5040) that is currently in development, mindfulness and coping with a diagnosis, and why the FDA tends to fast-track therapies that target orphan/rare diseases.

The immune system of the skin is sensitive to the environment. Sunlight and air temperature normally affect the skin, but, if you have Bullous Pemphigoid (BP), which is an autoimmune disease, getting sun or too much heat can lead to blistering.

Joshua Owens, MD, is a genetics resident at Cincinnati Children’s Hospital. Through his work, he encounters families seeking answers to the range of mysterious symptoms and diseases that have genetic origins. Read on to learn about the types of genetic testing that are available today, as well as the benefits and risks of testing.

The Propionic Acidemia Foundation is a 501(c)3 non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

שיר למטפלים נדירים, מאת לורה וויל

מחקרים מראים ששיעורי דיכאון וחרדה גבוהים יותר בקרב הורים ומטפלים בילדים עם צרכים טיפוליים מורכבים. זה לא תעלומה. אני רואה גורמים רבים התורמים לכך: אבל, לחץ כרוני, שינה לקויה, נטל טיפול, אובדן אפשרי של עבודה לטיפול בילד, לחץ כלכלי, בידוד חברתי ובעיות במערכת היחסים עם בן/בת הזוג. איזה מהגורמים הללו נכון עבורך?

Hello everyone. I am 35 years old and I have Propionic Acidemia (PA). Life with PA is not always easy. I was diagnosed late, which caused me to have a stroke at a very young age. After years of needing a wheelchair and walker, I made a somewhat normal recovery.

Anne-Marie McIntyre is a clinical research coordinator and research assistant at Cincinnati Children’s Hospital. Learn more about her educational and professional pathway, which led her to specialize in mitochondrial disease, and her work in research.

Bullous pemphigoid (BP) is a rare skin condition that causes large, fluid-filled blisters. In reviewing evidence of food-related triggers, find out which foods may trigger BP.

This month Desmond will head to preschool and be held and cared for by his community, as is his right. For any parent who has been through an individual health plan or an individual education plan (IEP), you know it is no simple task. I would love to share what this has been like for me and my son.

כתומכת קהילתית בתנועת הסברה למחלות נדירות, לאוני נהה יש תשוקה להדריך אחרים במסעם עם מחלות נדירות. ישבנו עם יוני כדי לשוחח על שגרת החוסן שלה ולשמוע את עצותיה לאחרים המחפשים משאבים חדשים לתמיכה ברווחתם.

Be ready to soothe minor emotional cuts and scrapes. These five tips can help you prepare a mental health first aid kit.

Dr. Pushpa Narayanaswami is a neurologist based in Boston, Massachusetts. At the core of her work is to help patients live each day a little better and aid them to achieve their goals of care together. Read on to discover what led her to pursue her field of study and where she sees rare disease research going in the next few years.

Patient-reported outcome measures (PROMs) help healthcare providers understand the impact of living with a disease on terms that matter to you.

Have you ever left a doctor appointment and realized you forgot to mention an important event in your health history? Having a rare disease often means you are seeing more than one doctor, and they all need to know your medical history. That means you have to remember all the symptoms and treatments you’ve had, including when they started and stopped, and how much they have affected your life.