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LATEST PATIENT WORTHY ARTICLES

Hereditary Angiodema

New Tool can Measure Disease Activity in Hereditary Angioedema Type 1 and 2

According to a story from Angioedema News, a team of researchers and scientists have successfully developed a tool that is able to measure disease activity

Parkinson's Disease

Ozzy Osbourne, Parkinson’s Disease, and Parkin Syndrome

According to a story from the Stamford Advocate, rock legend Ozzy Osbourne is making plans to go on tour again next fall. This is despite

Thyroid Cancer

Cabozantinib as a Treatment for Metastatic Medullary Thyroid Cancer

According to a story from The ASCO Post, the drug cabozantinib (marketed as Cometriq) was first approved by the US Food and Drug Administration (FDA)

Esophageal Cancer

Pembrolizumab as a Treatment for Esophageal Squamous Cell Carcinoma

According to a story from the ASCO Post, the US Food and Drug Administration (FDA) first approved the drug pembrolizumab as a treatment for advanced

Fibrodysplasia Ossificans Progressiva (FOP)

ICYMI: Company Announces Halt of Fibrodysplasia Ossificans Progressiva Clinical Development Program

According to a story from newswiretoday.com, the biopharmaceutical group Ipsen has recently announced its decision to halt its dosing of patients in its phase 3

CDD Receives Rare Disease Classification from WHO

As originally reported in BioSpectrum; the World Health Organization (WHO) has just approved the disease code for CDKL5 Deficiency Disorder (CDD), adding it to the

UPCOMING EVENTS

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Rare disease take a little creativity to deal with

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

There are over 7,000 rare diseases, often without

There are over 7,000 rare diseases, often without any or many experts. Many rare disease patients live without answers and so without proper treatment. It is still just as real of an illness.
Follow @colourblind_zebra for more posts like this 🌟
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#raredisease #chronicpain #chronicillness #spoonie #eds #endadpkd

Diseases effect mental health from many angles. So

Diseases effect mental health from many angles. Sometimes taking care of your health means spending time with people you care about. •
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#raredisease #adpkd #chronicillness #spoonie #chronicpain

Repost from @everylifeorg: “‘I didn’t have t

Repost from @everylifeorg: “‘I didn’t have the words to articulate my pain so I painted my hopelessness onto paper.’ -Shaniah, ‘You can’t see my pain’
By: Shaniah Barry
Category: Teen
Affiliation: Sickle Cell
Rare Disease Advocate Representative Of Maricopa, Arizona.
Congradulations to Shaniah for being one of the award recipients in the @everylifeorg 2019 Rare Artist Contest! To check out each artwork and story visit www.rareartist.org
Shaniahs’s piece will be showcased, alongside other talented rare disease artists, on February 27th from 5:00 p.m. to 7:00 p.m. at the Rare Artist Reception in the Hart Senate Office Building, Room 902 #RareDC2020” •
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#raredisease #chronicillness #chronicpain #spoonie #rarediseaseweek

Her rare disease meant a month of sleep overcame h

Her rare disease meant a month of sleep overcame her unexpectedly, her hours awake she felt outside this world. She describes her episodes with Sleeping Beauty Disorder as a parenthesis in life. The neurological disorder clears up after young adulthood, with no residual symptoms.
Check our the link in our bio to read our interview with her
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#raredisease #sleepingbeautydisorder #kleinelevinsyndrome #chronicillness #chronicpain #spoonie

Rare diseases can make your set of goals and chall

Rare diseases can make your set of goals and challenges unique to you, so your own expectations have to be tailored to you! •
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#raredisease #chronicillness #chronicpain #spoonie

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

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

By Patient Worthy Contributor

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

A New Clinical Trial is Underway for Pancreatic Cancer

By Trudy Horsting

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

By Trudy Horsting

‘Bosentan’ Approved by FDA to Treat Pulmonary Arterial Hypertension

By Sunniva Bean

The Power of Perspective When Living with Pain

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.

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