Meme: Earthquakes + Positivity

• Post author:Rebekah
• Post published:December 2, 2016
• Post category:Rare Disease

Sometimes it feels like nothing is going your way. Though it can be difficult, try to find the positive. Silver linings can make a world of difference.

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Meme: 24 Hours

• Post author:Rebekah
• Post published:December 1, 2016
• Post category:Rare Disease

Tomorrow is another day. New beginnings and new opportunities are right around the corner and bad days don't last forever. Keep your chin up!

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Meme: Add a Little Love

• Post author:Rebekah
• Post published:December 1, 2016
• Post category:Rare Disease

This is always something good to keep in mind, but especially around the holidays! Spoonies often are dealing with fatigue and pain. Don't feel like you need to do so…

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Meme: Just Keep Swimming

• Post author:Rebekah
• Post published:November 30, 2016
• Post category:Rare Disease

It's not an easy swim but moving forward is important. You could be so close to having luck be in your favor.

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Meme: Happy Thanksgiving!

• Post author:Rebekah
• Post published:November 24, 2016
• Post category:Rare Disease

Patient Worthy is wishing the very best Thanksgiving to our U.S. readers. Even if your meal isn't traditional, or is accompanied by a regiment of medications, we hope that you…

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FOP Webinar Nov 30th!

• Post author:Rebekah
• Post published:November 23, 2016
• Post category:Fibrodysplasia Ossificans Progressiva (FOP)/Timely

Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…

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Baby Rosemary’s Plea

• Post author:Rebekah
• Post published:November 17, 2016
• Post category:Ehlers-Danlos Syndrome/Rare Disease/Timely

Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…

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PKU Awareness Day is December 3rd – Here’s What You Can Take Action Tomorrow

• Post author:Rebekah
• Post published:November 14, 2016
• Post category:Phenylketonuria/Rare Disease/Timely

Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act  in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…

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When Nolan Took Control of Dystonia

• Post author:Rebekah
• Post published:November 14, 2016
• Post category:Dystonia/Timely

When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…

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Meme: You Got This

• Post author:Rebekah
• Post published:November 9, 2016
• Post category:Rare Disease

It doesn't matter what other people see, what matters is how tough YOU know you are. Your inner strength has gotten you through a lot and will continue to!

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Meme: Courageous Hearts

• Post author:Rebekah
• Post published:November 8, 2016
• Post category:Rare Disease

Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3

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Meme: Kindness = Strength

• Post author:Rebekah
• Post published:November 3, 2016
• Post category:Rare Disease

Don't let things as important as tenderness and compassion ever be mistaken for weakness or fragility!

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Live Facebook Event Tonight! Discussions about Grief

• Post author:Rebekah
• Post published:November 3, 2016
• Post category:Rare Disease

Author of Permission to Mourn, Tom Zuba, has developed  a new way to “do grief”.  His own personal losses of daughter, son, and wife have led him on the path…

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Share Some Spoonie Love

• Post author:Rebekah
• Post published:October 31, 2016
• Post category:Rare Disease

Maybe you've seen Patient Worthy's article about Spoon Theory, maybe you've sent the Spoon Theory to friends or relatives, maybe you started using the term "spoonie" before you even really…

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Don’t Forget It’s Liver Awareness Month!

• Post author:Rebekah
• Post published:October 31, 2016
• Post category:Primary sclerosing cholangitis/Rare Disease

It's liver awareness month so remember that not all liver problems are related to alcohol use(for example, Primary Biliary Cholangitis). You may never drink a drop nor use any kind…

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MDS Clinical Trial – Now Recruiting!

• Post author:Rebekah
• Post published:October 24, 2016
• Post category:Myelodysplastic syndromes/Rare Disease/Timely

Takeda Pharmaceuticals is looking for patients to enroll in their new trial, described as; "A Phase 2, Randomized, Controlled, Open-Label, Clinical Study of the Efficacy and Safety of Pevonedistat Plus Azacitidine…

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INSPIRE- MDS Clinical Trial

• Post author:Rebekah
• Post published:October 21, 2016
• Post category:Myelodysplastic syndromes/Rare Disease/Timely

There is a new Phase 3 Clinical that is currently recruiting MDS patients, take a look at the info below if you're interested. For more info and resources about MDS…

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Don’t Miss the Last 3 MDS Forums of 2016!!

• Post author:Rebekah
• Post published:October 21, 2016
• Post category:Myelodysplastic syndromes/Timely

Don't miss the last three MDS Patient & Family Forums in 2016! All three events are free, sponsored by The MDS Foundation. Topics to be covered include: Therapies and Patient…

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Quest for a Cure: A Gala for Castleman​ Disease

• Post author:Rebekah
• Post published:October 7, 2016
• Post category:Castleman Disease/Rare Disease

The Castleman Disease Collaborative Network is hosting a gala next month to raise money to continue to research the causes of Castleman Disease and find the cure. Castleman is as…

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Nolan’s Future Living with Dystonia

• Post author:Rebekah
• Post published:October 7, 2016
• Post category:Dystonia/Rare Disease

I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…

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Save the Date and Register for This MDS Event!

• Post author:Rebekah
• Post published:October 6, 2016
• Post category:Myelodysplastic syndromes

The MDS Foundation is hosting a free luncheon this November! It will be held at the Craftbar Restaurant at 900 Broadway (between 19th & 20th streets) in New York, NY.…

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Dystonia and Nolan’s Family

• Post author:Rebekah
• Post published:September 26, 2016
• Post category:Dystonia/Rare Disease

I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…

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Nolan Discusses Dystonia Treatment

• Post author:Rebekah
• Post published:September 21, 2016
• Post category:Dystonia/Rare Disease

 There [are] treatment[s] for symptoms for dystonia. For neuropathy they can give you things like anti-depressants which have been known to curb neuropathy. They can do botox injections into the muscles…

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Nolan’s Dystonia Diagnosis

• Post author:Rebekah
• Post published:September 9, 2016
• Post category:Dystonia/Rare Disease

The process to get diagnosed was a very long one. It was over two years that I first started seeing a neurologist regarding the concerns and issues that I was…

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Last Chance to Register!

• Post author:Rebekah
• Post published:September 6, 2016
• Post category:Myelodysplastic syndromes

Don't miss the registration period for the MDS Patient and Family Forum Sept. 10th! This event is free, sponsored by the MDS Foundation.The event will cover things like Therapies and…

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