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Alzheimer's disease without Neurofibrillary tangles

Scientists are Ramping Up Their Attack on Alzheimer’s Disease Through Immunotherapy

Rose Duesterwald - March 11, 2019

Rare Disease

London Patient Second Ever Cleared of HIV, Received Virus-Resistant Marrow

Epithelioid sarcomaRare Disease

Against the Odds: Maria’s Journey with – and beating – Rare Epithelioid Sarcoma

Rheumatoid ArthritisRheumatoid nodulosisRheumatoid vasculitis

Can direct-to-consumer genetic testing predict rheumatological diseases?

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Fabry Disease

The Argument for Mandatory Newborn Screening and Government Subsidies for Rare Diseases in India

The State of Rare Disease in India There are 7,000 known rare diseases worldwide. The Organization for Rare Diseases India (ORDI) estimates 70 million people are

MPS VI

Experimental MPS VI Drug Granted Rare Pediatric Disease Designation

A recent press release from the French biopharmaceutical company Inventiva announced that the Food and Drug Administration (FDA) had granted the company’s experimental mucopolysaccharidosis VI

Amyloidosis

Positive Results from Phase 3 Study of Acute Hepatic Porphyria Drug

Earlier this week, a press release from Alnylam Pharmaceuticals, Inc, announced the that the phase 3 study of their experimental acute hepatic porphyria drug Givosiran yielded

Parkinson's Disease

Strong Link Found Between Sleep Disorder and Future Parkinson’s

According to a publication from McGill University and obtained via EurekAlert, a massive study of 1,280 individuals confirmed a strong, long-suspected connection between rapid eye

Juvenile idiopathic arthritis

New Potential Treatment for Systemic-Onset Juvenile Idiopathic Arthritis Investigated in China

SOJIA SOJIA stands for systemic-onset Juvenile Idiopathic Arthritis (JIV). It is a very severe form of JIA which causes joint pain, inflammation, recurrent fevers, and a skin

Dravet Syndrome

Scotland Only Allows 10 Children to Receive New Cannabis-Based Seizure Drug

There are over 500 children in Scotland whose parents feel could benefit from a new cannabis-derived drug for seizures called Epidiolex. But recently, Secretary

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We provide rare patient news, well done.

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We met the talented Michaela at EveryLife’s rare artist reception last February. Check out @ogrefairydoodles for more digital art that emphasizes disabilities visibility with an art nouveau influence. Additionally, posts include detailed image IDs.

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We love the work of @spoonie_village! This post is from a series on space— and how we hold space for people with chronic illnesses. The creator of this work describes holding space as “essentially walking alongside someone without an agenda.” How do you hold space for spoonies in your life?

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This quote is from Tom Seaman’s article “The Real Impact of the Pain That People Cannot See.” Tom was diagnosed with dystonia about 20 years and works on providing resources to others living with chronic pain. The link to his full article is in our bio. @coachtom12

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It’s sometimes hard for people to understand that chronic diseases can have good and bad days, but “still” will always be part of your journey. The “chronic” in chronic conditions can feel draining without an end to “sickness”💆‍♀️ What goals you do to make for handling your chronic disease?
Follow @chronicillnessmemes to see more pictures like this one☝️

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If you have a rare disease, your disease may push all of your limits, passed what you realized you’re capable of. You rediscover the depths of your strength every doctors visit. Follow @positivemindsetdaily for more quotes like this one ✨

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When you have chronic pain and someone suggests you try Advil 🙄

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#SteveMaraboli #inspiration #PatientWorthy

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#raredisease #resilience #meme #chronicillness

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London Patient Second Ever Cleared of HIV, Received Virus-Resistant Marrow

This week, a publication from BioSpace announced that a second individual has been cleared of HIV in another astounding success for stem cell therapy. The

March 11, 2019

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One Little Boy Broke My Heart Until His Family Did This

By Alisha Stone / September 7, 2016 / 0 Comments

My heart goes out to two sets of courageous parents. They're the parents of two little baby boys, strangers who collided in a strange twist of fate, and were brought together by love and a lifesaving heart transplant. I can only...

Deadly Rare Kidney Cancer Has a Potential New Standard of Care

By Jessica Gladwell / September 14, 2017 / 0 Comments

Renal cell carcinoma is a particularly brutal cancer. Though rare, it is the most common kidney cancer in adults. While it starts there, it can also spread to the lungs and other organs. In many cases, by the time symptoms...

New Hope on the Horizon for Cystic Fibrosis Treatment

By Erica Zahn / June 7, 2017 / 0 Comments

Cystic fibrosis (CF) is an inherited autosomal disease that causes severe damage to the lungs, digestive system, and other organs in the body. The damage occurs because the cells that make mucus, sweat, and digestive juices cause those liquids to be...

When a Genuine Voice Boosts POTS Practical Support

By Sabina Kennedy / October 27, 2016 / 1 Comment

Call me biased, but blogs are changing everything. Millions of blogs have sprung up over the last few years and transformed the publishing world. Blogging turned the once-boring web into an ever-changing, dynamic creature. With the advent of the blog came blogging...

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

By Alisha Stone / October 13, 2016 / 1 Comment

A routine opening day, scores big for aplastic anemia! Little leaguers and other little T-ballers gathered ‘round the city of Lee, New York back in May 2016. As exciting as opening day was, what stole the show was a little...

Her Book About Living with Chronic Pain Will Make You Cheer

By Alisha Stone / October 11, 2016 / 0 Comments

I’ve been doing a lot of reading lately on Cushing’s Disease and happened to come across a book review of Choose Joy by Salina Gibson. I could relate to it on many levels. At first, I was going to dismiss it...

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

By Farrah Fontaine / October 6, 2016 / 1 Comment

Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, is probably one of the scariest things you can hear. For Joyce, it certainly was. While she didn't know completely what IPF is (idiopathic pulmonary fibrosis isn't something you hear every...

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

By Farrah Fontaine / August 31, 2016 / 0 Comments

If you're familiar with Behcet's disease and how it's diagnosed, you might be curious to learn how it's different for children. "Children?" you ask. Yes, children. Even though most people tend to develop Behcet's symptoms in their 20s and 30s,...

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

By Patient Worthy Contributor / May 13, 2016 / 0 Comments

Rare Opportunity to Rub Elbows With Biotech Head Honchos

By Alisha Stone / May 12, 2016 / 0 Comments

July 24-28, the World Federation of Hemophilia will be hosting its annual World Congress meeting—this time, in Orlando, Florida. As you might imagine, many pharmaceutical and biotech companies will be attending as sponsors of certain events. The very best scientists and...

Local Support Group Helps Those Who Suffer from Lyme Disease

By Alisha Stone / May 10, 2016 / 0 Comments

Let’s hear it for the Nor-Cal Chico Lyme disease support group based in California, which I read about in an Orion article by Roberto Fonseca! This non-profit society began back in 2012 and is designed for people and their loved...

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

By Alisha Stone / May 6, 2016 / 0 Comments

As a child growing up in Kentucky, my parents were more concerned about me getting chigger bites than tick bites. Looking back, a day after picking wildflowers in the field behind our log cabin, (yes, I'm serious!) I looked like...

Patient Worthy Succeeds 1000 Post Milestone

By Patient Worthy Contributor / April 14, 2016 / 0 Comments

Patient Worthy Succeeds 1000 Post Milestone and We Couldn't Have Done it Without You! Yes that feature image is of cupcakes- funfetti cupcakes to be exact. Baked with love by our Content Curation Manager Rebekah to celebrate! On June 22,...

CDC Zika Update – “Scarier than initially thought”

By Patient Worthy Contributor / April 14, 2016 / 0 Comments

If successfully dealing with the Ebola Outbreak for the past two years wasn't enough, the Western Hemisphere outbreak of the Zika Virus is coming in on the heals of that epidemic. Since April 2015, various health organizations from the many...

Here’s How to Protect Your Baby Against Dangerous BPD

By Alisha Stone / April 6, 2016 / 0 Comments

Hey, listen up! If you or someone you love is going to have a baby, I know you’ve already got a ton of stuff on your mind. But you need to take GREAT CARE to check out this highly important...

Meme Making Contest – WE HAVE A WINNER #PWMemeChallenge

By Patient Worthy Contributor / April 5, 2016 / 0 Comments

Ladies and Gentlemen, the wait is now over! Patient Worthy has found its first #PWMemeChallenge winner! Our very first winner is no other than, the one and only: Ms. Laurie Lelacheur, a bronze level Patient Worthy contributor Laurie is...

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor / April 4, 2016 / 0 Comments

IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come and we sure hope you've been getting your meme game...

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor / March 16, 2016 / 2 Comments

Rare Diseases Could Be Diagnosed Earlier with Better Training for GPs to Avoid Years of Misdiagnosis

By Rose Duesterwald / March 8, 2019 / 0 Comments

Although each disease on its own may be rare, a huge number of people are living with a rare disease-- and half of these people are children. About 30 percent of these children will die before the age of five. Genetic testing has...

What is it Like Living with Addison’s Disease?

By Jennifer Walker / December 14, 2016 / 1 Comment

Living with Addison’s disease can be a challenge. Addison’s disease, also known as adrenal insufficiency or hypocortisolism, is a rare disorder of the endocrine system and affects approximately 1 out of 100,000 people. It is most commonly caused by an...

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Scientists are Ramping Up Their Attack on Alzheimer’s Disease Through Immunotherapy

London Patient Second Ever Cleared of HIV, Received Virus-Resistant Marrow

Against the Odds: Maria’s Journey with – and beating – Rare Epithelioid Sarcoma

Can direct-to-consumer genetic testing predict rheumatological diseases?

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