Rare Patient News. Well Done. - Patient Worthy

LATEST PATIENT WORTHY ARTICLES

Lambert-Eaton Myasthenic Syndrome

Study Tracks Survival, Quality of Life, and Follow up for Lambert-Eaton Myasthenic Syndrome Patients

According to a study published in the scientific journal Neurology, the survival rates of patients with Lambert-Eaton myasthenic syndrome (LEMS) were compared to that of the

editor's choice

Rare Disease

Editor’s Choice: Sending Rare Love on Valentine’s Day

Happy Valentine’s Day! We hope everyone’s enjoying some treats and appreciating the people they love today– whether that’s a romantic partner, a friend, or a

Rare Disease

Rare Disease Patients Continue to Face Barriers to Treatment Around the World

According to a story from mmm-online.com, a recent infographic highlights the challenges that rare disease patients worldwide still face when it comes to getting the

Amyotrophic Lateral Sclerosis

Orphan Drug Designation and Two New Clinical Trials for ALS Treatment

NeuroSense Therapeutics, a biotechnology company, is in the process of developing PrimeC. PrimeC was created for the treatment of amyotrophic lateral sclerosis (ALS), and it

Alpha-Mannosidosis

An In-Depth Look at the European Medicines Agency’s Orphan Drug Designation Post-Brexit

On February 3, 2020, twenty-seven newly installed flags of the European Union stood in the gleaming lobby of the new European Medicines Agency (EMA)

Charcot-Marie-Tooth disease

The Muscular Dystrophy Association Steps up for Rare Neuromuscular Diseases

According to a story from Charcot-Marie-Tooth News, the Muscular Dystrophy Association (MDA) may at first seem like a group that is solely focused on helping

UPCOMING EVENTS

FOLLOW US ON INSTAGRAM

Dealing with a rare disease is never something you

Dealing with a rare disease is never something you can breeze past, but it’s good to be reminded that we interpret our situation through our own lens, and positivity is contagious. We don’t chose the hand were dealt, but we choose how we play it.
Thank you @narcolepsyladi for sharing this inspiring graphic! •
•
•
#raredisease #chronicpain #chronicillness #spoonie

Pulmonary arterial hypertension is complex because

Pulmonary arterial hypertension is complex because it effects each patient differently. PAH is a disorder which affects the blood pressure in the lungs, causing the blood to get tired putting in extra work.
Thanks to PAHassociation.org for these PAH facts! •
•
•
#raredisease #chronicillness #chronicpain #pah #pulmonaryarterialhypertension

A rare disease can mean a lot of time saving energ

A rare disease can mean a lot of time saving energy, and expending it quickly. We each have our own balance 🌟
Follow @spoonie_village for disease content like this! •
•
•
#raredisease #chronicillness #chronicpain #rarediseaseday #spoonie

Living with a rare disease can reveal weakness and

Living with a rare disease can reveal weakness and prove strength at the same time. To show failure is strong, to admit vulnerability is strong. You are not weak for hurting, you are strong for dealing with it. Follow @artsyaffirmations for inspiring messages like this one 🌟 ••
•
#raredisease #chronicillness #chronicpain #spoonie

Taking the weekend off can be the most productive

Taking the weekend off can be the most productive time. It’s okay if you need time and space to recuperate.
Follow @thechroniccommunity for thoughtful graphics^^ •
•
•
#raredisease #chronicillness #chronicpain

Rare disease take a little creativity to deal with

Rare disease take a little creativity to deal with. Let that be an opportunity! •
•
•
#raredisease #chronicpain #chronicillness

Rare diseases and mental health issues are intertw

Rare diseases and mental health issues are intertwined. It is hard to tease apart our mind and our body when our body is hurting. Rare disease needs includes a long list of doctors bills and specialists adding to the cheque book, it can be hard to squeeze in the money for your own emotional healthcare. Here are some helpful tips by @therapyforwomen how you can help yourself without paying for it. •
•
•
#raredisease #chronicillness #chronicpain

Rare disease week is just around the corner on Cap

Rare disease week is just around the corner on Capitol Hill. On February 25th-28th, patients will learn how to advocate for their needs before meeting with the representatives who make these decisions. Will you be one of them? Read the article interviewing Julia Jenkins, executive director of EveryLife Foundation that makes it happen. She said to Patientworthy, “Without good policies that foster investment, these treatments are not going to become reality.” •
•
•
#raredisease #chronicpain #chronicillness #rarediseaseweek #everylifefoundation

Cystic fibrosis is caused by a gene mutation that

Cystic fibrosis is caused by a gene mutation that causes too much mucus to block up the respiratory and digestive systems. The disease can be helped with treatment and healthy habits. •
•
•
#raredisease #chronicillness #spoonie #cysticfibrosis #cfwarrior

TRENDING NOW ON PATIENT WORTHY

Study: Pozelimab Shows Positive Results in the Treatment of Paroxysmal Nocturnal Hemoglobinuria

By Kendall Mason

Deadly Rare Kidney Cancer Has a Potential New Standard of Care

By Jessica Gladwell

New Hope on the Horizon for Cystic Fibrosis Treatment

When a Genuine Voice Boosts POTS Practical Support

By Sabina Kennedy

Aplastic Anemia: What Did Baseball Do for One Happy Little Boy?

By Alisha Stone

Her Book About Living with Chronic Pain Will Make You Cheer

By Alisha Stone

The Bottom Line? Transplant is the Only Thing That Cures IPF

By Farrah Fontaine

One Little Boy Broke My Heart Until His Family Did This

By Alisha Stone

How Do You Know If Your Kid Has Behcet’s?

By Farrah Fontaine

Recently Diagnosed w/CVID? Join the Herd! #ZebraNation

By Patient Worthy Contributor

Rare Opportunity to Rub Elbows With Biotech Head Honchos

By Alisha Stone

bullseye with dart

Local Support Group Helps Those Who Suffer from Lyme Disease

By Alisha Stone

What a Freaking Nightmare: No One is Safe From Lyme Disease!

By Alisha Stone

Patient Worthy Succeeds 1000 Post Milestone

By Patient Worthy Contributor

CDC Zika Update – “Scarier than initially thought”

By Patient Worthy Contributor

Here’s How to Protect Your Baby Against Dangerous BPD

By Alisha Stone

Meme Making Contest – WE HAVE A WINNER #PWMemeChallenge

By Patient Worthy Contributor

<img width="500" height="185" src="https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_851/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest.jpg" class="attachment-500x500 size-500x500 wp-post-image" alt="" srcset="https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_851/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest.jpg 851w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_150/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-150x56.jpg 150w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_300/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-300x111.jpg 300w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_768/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-768x284.jpg 768w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_696/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-696x258.jpg 696w" sizes="(max-width: 500px) 100vw, 500px" />

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor

<img width="500" height="185" src="https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_851/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest.jpg" class="attachment-500x500 size-500x500 wp-post-image" alt="" srcset="https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_851/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest.jpg 851w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_150/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-150x56.jpg 150w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_300/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-300x111.jpg 300w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_768/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-768x284.jpg 768w, https://cdn.shortpixel.ai/client/q_glossy,ret_img,w_696/https://patientworthy.com/wp-content/uploads/2016/03/Meme-Making-Contest-696x258.jpg 696w" sizes="(max-width: 500px) 100vw, 500px" />

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor

Behind The Smile – Invisible Illness Awareness: Stiff Person Syndrome

By Debra Richardson

More Research is Needed for Myositis Specific Treatments

By Trudy Horsting

Six Tips for Handling Body Image When Living with a Rare and/or Chronic Disease

By Trudy Horsting

First Patient Enrolled in a New Methylmalonic Acidemia Trial

By Trudy Horsting

‘Bosentan’ Approved by FDA to Treat Pulmonary Arterial Hypertension

By Sunniva Bean

Rare Disease Patients Continue to Face Barriers to Treatment Around the World

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

Let’s Work Together!

Partner With Us
Submit a Story
Become a Contributor

Keep Up to Date

Subscribe to Our Newsletter
Check Out Rare Events
Get Inspired By Our Memes

Learn More

About Us
Rare Diseases and Conditions
Terms of Use
Privacy Policy

© Copyright Patient Worthy

<noscript><iframe src="https://www.googletagmanager.com/ns.html?id=GTM-PKC9W36" height="0" width="0" style="display:none;visibility:hidden">