Rare Tips — Blog v2

How is Congenital Myastenic Syndrome (CMS) Different from Myasthenia Gravis (MG)?

All about Congenital Myasthenic Syndromes at a glance

RARE TIPSKnow Rare TeamApril 4, 2024Resources, Rare Tips

What You Need to Know about CMS and Clinical Trials

Get essential information about congenital myasthenic syndromes (CMS) and why clinical trials are a crucial element in the path towards better treatment for the condition.

RARE TIPSKnow Rare TeamApril 4, 2024Rare Tips

Needle Phobia in Children: What It Is, What It Isn’t, and How to Help

Get the basics on needle anxiety, one of the top medical fears among children, and discover tips to manage it.

RARE TIPSKnow Rare TeamMarch 28, 2024Rare Tips

What You Need to Know about the Link Between Oral Wellness and Your Overall Health

On World Oral Health Day (March 20), we’re taking a closer look at what your oral health can tell you about your well-being.

RARE TIPSKnow Rare TeamMarch 20, 2024Rare Tips

Five Empowering Ways to Mark Rare Disease Month

As we step into Rare Disease Month this February, it's an opportune time to celebrate resilience, foster connection, and empower ourselves within the rare disease community.

RARE TIPSKnow Rare TeamFebruary 6, 2024Rare Tips

Teens, Substance Use, and Rare Disease

An expert on adolescent health shares tips for families navigating substance use concerns alongside rare disease.

RARE TIPSGina D. WagnerFebruary 5, 2024Rare Tips

Safeguard Your Holidays: The Importance of Flu Protection

It’s National Influenza Vaccination Week: find out why the flu vaccine should be a critical part of your winter to-do list.

RARE TIPSKnow Rare TeamDecember 6, 2023Rare Tips

A Metabolic Dietician on Nutrition and Rare Disease

Special diets can be a challenging but necessary part of rare disease treatment. Here, a leading dietician offers advice for supporting nutrition from birth through adulthood.

RARE TIPSGina D. WagnerOctober 26, 2023Rare Tips

Know Rare Tips: How to Support a Friend Who’s Been Diagnosed With a Rare Disease

Tips from Know Rare on what to do and what to say to be a supportive ally to a friend, family member, or other loved one who has been diagnosed with a rare disease.

RESOURCESLaura WillOctober 24, 2023Rare Tips

Navigating Adolescence with Rare Disease

We spoke with several teenagers and their parents about how they cope with different aspects of living with rare disease. Here are their best tips and advice.

RESOURCESGina D. WagnerApril 17, 2023Rare Tips

6 Tips to Help Fight Fatigue in Rare Disease

Many patients managing rare diseases and conditions will be familiar with fatigue. Though it might seem like a common annoyance, fatigue is a debilitating symptom that can sap physical energy and reduce mental clarity and alertness.

Evelyn LeighApril 3, 2023fatigue, Rare Tips

Living With Myasthenia Gravis: 10 Things to Know

MG is a chronic condition with symptoms that come and go. It can be severe, but it’s also a treatable condition. Here are 10 key insights for MG patients and their support networks.

Nina WachsmanFebruary 15, 2023mg, Rare Tips

Healthy for the Holidays

The holiday season is just around the corner, and for many, this time brings joy and connection; however, if you are navigating the diagnosis of a rare disease, the holidays can be stressful and challenging. Here are our five ways to protect your emotional health during the busy holiday season.

RARE RESOURCESKnow Rare TeamDecember 20, 2022Rare Tips, Mental Health

Tips for Managing a Rare Blistering Disease

If you have been diagnosed with pemphigus vulgaris, here are some lifestyle management tips you can do that can help.

RARE RESOURCESNina WachsmanNovember 14, 2022pv, bp, Rare Tips

Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support

When what you see up ahead feels way too enormous and scary to manage by yourself, it can leave you feeling lonely and vulnerable. There can be a lot of trial and error involved before you finally find the one who finally hears you and tells you those words you long to hear…

RARE RESOURCESKnow Rare TeamOctober 19, 2022Rare Tips

A Tiger Mom’s Guide for Sudden Hospitalization for a Child with a Rare Disease

If you’re like Lynn Nezin, you’re ready to battle for your child, especially if they have to suddenly go to the hospital for something either related or not related to their rare disease. Lynn’s son, Casey, was born with Glycogen Storage Disease Type 1A, also known as Von Gierke’s Disease. Here is what Lynn has learned…

RARE RESOURCESKnow Rare TeamSeptember 29, 2022Rare Tips

TargetCancer Foundation’s 5 Tips for Caregivers

Caring for a loved one with a rare disease can be emotionally and physically exhausting. And that’s certainly true for rare cancer caregivers. Read five pieces of advice from the leaders of TargetCancer Foundation, Jim Palma and Kristen Palma Poth.

RARE RESOURCESGina D. WagnerAugust 16, 2022Rare Tips

What Every Rare Cancer Patient Should Know

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.

RARE RESOURCESGina D. WagnerAugust 16, 2022rare cancer, Rare Tips