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Yearly Archives: 2016

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  2. 2016>
  3. Page 23
Aplastic Anemia: A Video Review
[Source: pixabay.com]

Aplastic Anemia: A Video Review

  • Post author:Erica Zahn
  • Post published:September 19, 2016
  • Post category:Aplastic anemia/Rare Disease

Aplastic anemia is both a bone and a blood disease. A person with this condition has bone marrow that no longer makes red blood cells, white blood cells, or platelets.…

Continue Reading Aplastic Anemia: A Video Review
What is the “Terrible Paradox” of FH?
[Source: pixabay.com]

What is the “Terrible Paradox” of FH?

  • Post author:James Ernest Cassady
  • Post published:September 19, 2016
  • Post category:Familial Hypercholesterolemia/Rare Disease/Timely

The National Lipid Association hosted its 2016 Scientific Sessions from May 19-22 of this year and included sessions on familial hypercholesterolemia (FH). Now, in recognition of FH Awareness Day (September…

Continue Reading What is the “Terrible Paradox” of FH?
Pisoteando la distonía Por Diversión e inspiración
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Pisoteando la distonía Por Diversión e inspiración

  • Post author:Patient Worthy Contributor
  • Post published:September 19, 2016
  • Post category:Dystonia/Rare Disease

La distonía puede retardar su cuerpo, pero que no puede matar su espíritu Pocas veces en la vida son tan emocionantes -o tan agitado, como los últimos días de la…

Continue Reading Pisoteando la distonía Por Diversión e inspiración
El peso de cuando ataca la gripe metabólica

El peso de cuando ataca la gripe metabólica

  • Post author:Patient Worthy Contributor
  • Post published:September 18, 2016
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

  De la inmunodeficiencia de puede causar aumento de peso. Eso no es ningún secreto. Pero a menudo, inmunodeficiencia variable común (CVID) pacientes se sorprenden cuando empiezan a aumentar de…

Continue Reading El peso de cuando ataca la gripe metabólica
WebMD no más? Google Intensificandose

WebMD no más? Google Intensificandose

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2016
  • Post category:Rare Disease

  Esté atento a WebMD. Google está a punto de dejarte retorciéndo en el piso... Usted puede creer que uno de cada 20 búsquedas de Google están basados en la…

Continue Reading WebMD no más? Google Intensificandose
Editor’s Choice: 2017’s Good News, Narcolepsy Reveal and Botox

Editor’s Choice: 2017’s Good News, Narcolepsy Reveal and Botox

  • Post author:Patient Worthy Contributor
  • Post published:September 16, 2016
  • Post category:Dystonia/HAE/Narcolepsy/Rare Disease

Welcome back Patient Worthians! Are you looking forward to 2017? Well you should be if you have HAE! Ever heard of Botox? If you have, you probably think of Hollywood…

Continue Reading Editor’s Choice: 2017’s Good News, Narcolepsy Reveal and Botox
When Pharma Hands Out Hemophilia Freebies, Are They Really Free?
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When Pharma Hands Out Hemophilia Freebies, Are They Really Free?

  • Post author:Ronald Ledsen
  • Post published:September 16, 2016
  • Post category:Hemophilia A/Hemophilia B/Rare Disease

Pharmaceutical marketing can often be a very big, very sharp double-edged sword. In order to make drugs and stay in business, pharmaceutical companies have to speak to their audience, which…

Continue Reading When Pharma Hands Out Hemophilia Freebies, Are They Really Free?
Why Zellweger Syndrome is a Parent’s Worst Nightmare
Source: www.giphy.com

Why Zellweger Syndrome is a Parent’s Worst Nightmare

  • Post author:Erica Zahn
  • Post published:September 16, 2016
  • Post category:Rare Disease/Zellweger spectrum syndromes

It's not a happy story. Little Riley Brown beat the odds and celebrated his first birthday last April. Two months later, he passed away from the rare congenital disorder called…

Continue Reading Why Zellweger Syndrome is a Parent’s Worst Nightmare
What Happens When You Tell a Person with CF to Get Up and Move?
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What Happens When You Tell a Person with CF to Get Up and Move?

  • Post author:PW Blogger
  • Post published:September 16, 2016
  • Post category:Cystic Fibrosis/Rare Disease

What do you think of when you hear "cystic fibrosis"? Well, if you know what it is, probably nothing good. If you don't know about cystic fibrosis and you've clicked…

Continue Reading What Happens When You Tell a Person with CF to Get Up and Move?
Esta cura podria morir, Aquí hay 3 razones por qué

Esta cura podria morir, Aquí hay 3 razones por qué

  • Post author:
  • Post published:September 16, 2016
  • Post category:Rare Disease

  Cuando la Cámara de Representantes aprobó una ley innovadora, Ley de Curas siglo 21, en un voto de 344-77 voto, la decisión se sentía como un desfibrilador, el despliegue…

Continue Reading Esta cura podria morir, Aquí hay 3 razones por qué
This Amazing Doctor Made All the Difference in Treating Leprosy
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This Amazing Doctor Made All the Difference in Treating Leprosy

  • Post author:Erica Zahn
  • Post published:September 15, 2016
  • Post category:Hansen's disease/Rare Disease

On February 7, 2016, an elderly man died in the foothills of the San Gabriel Mountains. Okay, but why is that remarkable? After all, elderly men and women pass away…

Continue Reading This Amazing Doctor Made All the Difference in Treating Leprosy
Helping This Father with MSA Make Fun New Memories

Helping This Father with MSA Make Fun New Memories

  • Post author:Ronald Ledsen
  • Post published:September 15, 2016
  • Post category:Multiple system atrophy (MSA)/Rare Disease

Maybe it’s just me, but it feels like turning on the television, picking up a newspaper, or going online should come with a trigger warning. Everywhere you turn it seems…

Continue Reading Helping This Father with MSA Make Fun New Memories
This is the Secret to a Successful Life with FMF
Source: www.pixabay.com

This is the Secret to a Successful Life with FMF

  • Post author:Farrah Fontaine
  • Post published:September 15, 2016
  • Post category:Familial Mediterranean Fever/Rare Disease

Most people don't associate the word "fever" with something chronic. They think of it in terms of a flu or passing infection. You've heard the phrase: "Feed a cold. Starve a…

Continue Reading This is the Secret to a Successful Life with FMF
What Do You Know About Myelodysplastic Syndromes Management?
Source: www.pixabay.com

What Do You Know About Myelodysplastic Syndromes Management?

  • Post author:PW Blogger
  • Post published:September 15, 2016
  • Post category:Myelodysplastic syndromes/Rare Disease

We have all heard the phrase knowledge is power. Everyone, at some point in their lives, has to learn how to do something. From cooking, to driving, to using the…

Continue Reading What Do You Know About Myelodysplastic Syndromes Management?
La nueva mascota crónica? Conozcamos al #SpoonieShark!

La nueva mascota crónica? Conozcamos al #SpoonieShark!

  • Post author:Patient Worthy Contributor
  • Post published:September 15, 2016
  • Post category:Rare Disease

desarrollos recientes de Twitter en la comunidad crónica han implicado el posible descubrimiento de una nueva mascota. Karl Austin (@ Porkchop275) se encontró con una imagen de un tiburón, y…

Continue Reading La nueva mascota crónica? Conozcamos al #SpoonieShark!
Myasthenia Gravis: Looking for Recognition of the Fight
[Source: pixabay.com]

Myasthenia Gravis: Looking for Recognition of the Fight

  • Post author:Patient Worthy Contributor
  • Post published:September 14, 2016
  • Post category:Myasthenia Gravis

If you see some one with a bandage or a cast, you wouldn't question the injury. If someone tells you they have cancer, you wouldn't judge the bad days. People,…

Continue Reading Myasthenia Gravis: Looking for Recognition of the Fight
Familial Cold Autoinflammatory Syndrome (FCAS): CAPS NLRP3 Gene
Pixabay

Familial Cold Autoinflammatory Syndrome (FCAS): CAPS NLRP3 Gene

  • Post author:Erica Zahn
  • Post published:September 14, 2016
  • Post category:CAPS/FCAS/Rare Disease

Familial cold autoinflammatory syndrome (FCAS) is an extremely rare disorder. It's characterized by episodes of joint pain, fever, and other symptoms of inflammation. All of these symptoms are triggered by…

Continue Reading Familial Cold Autoinflammatory Syndrome (FCAS): CAPS NLRP3 Gene
One Brave Doctor’s Personal Battle with Mycosis Fungoides
Source: www.pixabay.com

One Brave Doctor’s Personal Battle with Mycosis Fungoides

  • Post author:Erica Zahn
  • Post published:September 14, 2016
  • Post category:mycosis fungoides/Rare Disease

Dr. Paul Raffer was a neurologist who practiced medicine until he got sick with mycosis fungoides. His symptoms began on his skin, and after consulting with a colleague, he was immediately…

Continue Reading One Brave Doctor’s Personal Battle with Mycosis Fungoides
Don’t Just Complain About Amyloidosis, Do Something About It
Source: Pixabay

Don’t Just Complain About Amyloidosis, Do Something About It

  • Post author:James Ernest Cassady
  • Post published:September 14, 2016
  • Post category:Amyloidosis/Rare Disease/Timely

On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…

Continue Reading Don’t Just Complain About Amyloidosis, Do Something About It
Usted nunca va a adivinar cómo ser cursi le salva la vida a esta chica

Usted nunca va a adivinar cómo ser cursi le salva la vida a esta chica

  • Post author:Patient Worthy Contributor
  • Post published:September 14, 2016
  • Post category:GLUT1 DS/Rare Disease

La mayoría de los padres están ansiosos de que las primeras palabras de su hijo. Pero como el Daily Mail en el Reino Unido informa, Stevie y David Taylor esperaron…

Continue Reading Usted nunca va a adivinar cómo ser cursi le salva la vida a esta chica
Why It Pays To Be Smart About Aplastic Anemia
Source: https://pixabay.com/en/blood-cells-red-medical-medicine-1813410/

Why It Pays To Be Smart About Aplastic Anemia

  • Post author:Alisha Stone
  • Post published:September 13, 2016
  • Post category:Aplastic anemia/Rare Disease

I recently posted an article on aplastic anemia in response to another post that I’d read. I felt compelled to mention that a dear friend of mine was diagnosed with…

Continue Reading Why It Pays To Be Smart About Aplastic Anemia
How To Change Dystonia The Botox Way

How To Change Dystonia The Botox Way

  • Post author:Sabina Kennedy
  • Post published:September 13, 2016
  • Post category:Dystonia/Rare Disease

Botox may be the new fresh face headliner in the therapeutic industry. Who knew? We see and read conversations about Botox more commonly in top women’s magazines, the likes of Cosmopolitan,…

Continue Reading How To Change Dystonia The Botox Way
Little Girl Laughs in the Face of SBS
[Source: pixabay.com]

Little Girl Laughs in the Face of SBS

  • Post author:Ronald Ledsen
  • Post published:September 13, 2016
  • Post category:Rare Disease/Short bowel syndrome

If you’re the parent of a small child—or any size or age child, really—here’s a good reminder of why you should hold your baby a little closer and be thankful…

Continue Reading Little Girl Laughs in the Face of SBS
How to Keep One Woman from Drowning in Myelodysplastic Syndrome Debt
[Source: pixabay.com]

How to Keep One Woman from Drowning in Myelodysplastic Syndrome Debt

  • Post author:Ronald Ledsen
  • Post published:September 13, 2016
  • Post category:Myelodysplastic syndromes/Rare Disease/Timely

You know that saying people use when someone’s facing a flood of crises? “God doesn’t give you more than you can handle?” Depending on your point of view that may…

Continue Reading How to Keep One Woman from Drowning in Myelodysplastic Syndrome Debt
Mujer batalla contra la FDA
PublicDomainPictures / Pixabay

Mujer batalla contra la FDA

  • Post author:Patient Worthy Contributor
  • Post published:September 13, 2016
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia

Nadie sabe los peligros del colesterol malo mejor que los pacientes con hipercolesterolemia familiar (HF). De acuerdo con la Fundación FH, hay dos formas de FH. 1) HeFH, y 2)…

Continue Reading Mujer batalla contra la FDA
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The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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