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clinical trial

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A Joint Venture for New Treatment of Rare Pediatric Epilepsies!
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A Joint Venture for New Treatment of Rare Pediatric Epilepsies!

  • Post author:Rebekah
  • Post published:January 31, 2017
  • Post category:Lennox-Gastaut syndrome/Rare Disease

Pharmaceutical companies Takeda and Ovid have agreed to work together to develop a new drug for rare pediatric epilepsies. The continued development of Takeda’s compound TAK-935 will be shared by…

Continue Reading A Joint Venture for New Treatment of Rare Pediatric Epilepsies!
Would You Trust This Craigslist Clinical Trial?
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Would You Trust This Craigslist Clinical Trial?

  • Post author:Kiki Jones
  • Post published:January 19, 2017
  • Post category:Complex Regional Pain Syndrome/Rare Disease

There’s a CRPS clinical trial being listed on Craigslist. Not kidding. You can check it out here. Now, am I the only one who finds that really odd? When I…

Continue Reading Would You Trust This Craigslist Clinical Trial?
Bringing the Gift of Christmas Hope to CRPS Patients
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Bringing the Gift of Christmas Hope to CRPS Patients

  • Post author:Ronald Ledsen
  • Post published:December 26, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

For anyone living with severe chronic pain from Complex Regional Pain Syndrome (CRPS), the best possible gift they could receive—short of a cure—would be a good treatment. To date, however,…

Continue Reading Bringing the Gift of Christmas Hope to CRPS Patients
FOP Webinar Nov 30th!
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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…

Continue Reading FOP Webinar Nov 30th!
Fabry Disease Clinical Trial, Balance
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Fabry Disease Clinical Trial, Balance

  • Post author:Kathy Devanny
  • Post published:November 18, 2016
  • Post category:Fabry Disease/Rare Disease

Fabry Disease is the number number two Lysosomal Storage disease in terms of numbers affected. It is an X-linked disease, with males passing on the mutated allele to all of their…

Continue Reading Fabry Disease Clinical Trial, Balance
Proof of Concept Study for Cervical Dystonia
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Proof of Concept Study for Cervical Dystonia

  • Post author:Kathy Devanny
  • Post published:November 14, 2016
  • Post category:Dystonia/Rare Disease/Timely

Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…

Continue Reading Proof of Concept Study for Cervical Dystonia
MDS Clinical Trial – Now Recruiting!

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…

Continue Reading MDS Clinical Trial – Now Recruiting!
INSPIRE- MDS Clinical Trial

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…

Continue Reading INSPIRE- MDS Clinical Trial
What is the Truth Behind Fabry and ERT?

What is the Truth Behind Fabry and ERT?

  • Post author:James Ernest Cassady
  • Post published:September 6, 2016
  • Post category:Fabry Disease/Rare Disease/Timely

If you've got Fabry Disease and you live in Canada, you've GOT to check this out. If you don't have Fabry Disease, allow me to clue you in: It's a…

Continue Reading What is the Truth Behind Fabry and ERT?
Are You Willing to Try Cord Blood to Cure Your Rare Disease?

Are You Willing to Try Cord Blood to Cure Your Rare Disease?

  • Post author:Alisha Stone
  • Post published:August 25, 2016
  • Post category:Epidermolysis Bullosa/Rare Disease

About two months ago, I bucked up and started recycling. (No this is NOT clickbait.) Now let me first explain that for years as a “responsible adult,” I did my…

Continue Reading Are You Willing to Try Cord Blood to Cure Your Rare Disease?
Will This RDEB Treatment Be The One That Takes to the Skies?
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Will This RDEB Treatment Be The One That Takes to the Skies?

  • Post author:Ronald Ledsen
  • Post published:August 17, 2016
  • Post category:Epidermolysis Bullosa/Rare Disease

It’s always awesome to announce a new clinical trial, especially for something that could offer relief to people suffering from the rarest of the rare conditions. And rare doesn’t begin…

Continue Reading Will This RDEB Treatment Be The One That Takes to the Skies?
Acromegaly Clinical Trial: MPOWERED

Acromegaly Clinical Trial: MPOWERED

  • Post author:Rebekah
  • Post published:July 25, 2016
  • Post category:Acromegaly/Rare Disease

Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…

Continue Reading Acromegaly Clinical Trial: MPOWERED
Sad News for a Promising New Myasthenia Gravis Treatment
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Sad News for a Promising New Myasthenia Gravis Treatment

  • Post author:Ronald Ledsen
  • Post published:June 21, 2016
  • Post category:Myasthenia Gravis/Rare Disease

So this is kind of a bummer: Clinical trials looking into using Alexion Pharmaceutical’s drug Soliris for treatment-resistant generalized myasthenia gravis have just come up short of expectations. Soliris, which…

Continue Reading Sad News for a Promising New Myasthenia Gravis Treatment
Treatment Today and Why It’s Giving You Permission to Hope
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Treatment Today and Why It’s Giving You Permission to Hope

  • Post author:Erica Zahn
  • Post published:June 20, 2016
  • Post category:Huntington's disease/Rare Disease

In the past, a diagnosis of Huntington's disease offered the patient absolutely no hope. It was understood that a downward trajectory was the only way the disease would play out,…

Continue Reading Treatment Today and Why It’s Giving You Permission to Hope
New Treatment Gets to the Heart of CPT II
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New Treatment Gets to the Heart of CPT II

  • Post author:James Ernest Cassady
  • Post published:June 17, 2016
  • Post category:Carnitine palmitoyl transferase 2 deficiency/Rare Disease/Timely

There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…

Continue Reading New Treatment Gets to the Heart of CPT II
Is This New MDS Treatment Worth Getting Excited About?

Is This New MDS Treatment Worth Getting Excited About?

  • Post author:Kiki Jones
  • Post published:June 17, 2016
  • Post category:Myelodysplastic syndromes/Rare Disease

In the rare disease world, nothing causes rippling waves of excitement quite like a new drug announcement. So prepare for a tsunami, because that’s exactly what you’re getting… sort of. Spring…

Continue Reading Is This New MDS Treatment Worth Getting Excited About?
Taking a New Look at an Old Drug to Fight MG
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Taking a New Look at an Old Drug to Fight MG

  • Post author:Ronald Ledsen
  • Post published:June 17, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Quick question: What does multiple myeloma have to do with myasthenia gravis (MG)? On the surface, not much—one is a rare cancer of the blood, the other is an autoimmune…

Continue Reading Taking a New Look at an Old Drug to Fight MG
Should You Participate in a Clinical Trial?

Should You Participate in a Clinical Trial?

  • Post author:Patient Worthy Contributor
  • Post published:June 1, 2016
  • Post category:Rare Disease

Sometimes I hear people say “I don’t want to be a guinea pig”, “They are not going to experiment on me!”,  or similar sentiments regarding medical trials. On the one…

Continue Reading Should You Participate in a Clinical Trial?
DBS Clinical Trial for Dystonia Patients!

DBS Clinical Trial for Dystonia Patients!

  • Post author:Rebekah
  • Post published:May 19, 2016
  • Post category:Dystonia/Rare Disease

Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…

Continue Reading DBS Clinical Trial for Dystonia Patients!
If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

  • Post author:Alisha Stone
  • Post published:May 11, 2016
  • Post category:mastocytosis/Rare Disease

What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…

Continue Reading If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!
How The French Are Coming To Save Your Life

How The French Are Coming To Save Your Life

  • Post author:Alisha Stone
  • Post published:April 18, 2016
  • Post category:mastocytosis/Rare Disease

Well, the French are at it again—thank goodness! French pharmaceutical company AB Science, announced in 2015 that it hit its endpoints in a phase lll clinical trial for human subjects who…

Continue Reading How The French Are Coming To Save Your Life
Why This New CVID Research Is The Most Exciting Thing You’ll Hear About Today

Why This New CVID Research Is The Most Exciting Thing You’ll Hear About Today

  • Post author:Ronald Ledsen
  • Post published:April 14, 2016
  • Post category:CVID/Rare Disease/Timely

Most researchers like to say that their work is “groundbreaking” or “revolutionary.” And most reporters—whether print or digital—like to use those words too, because they help get people’s attention. But…

Continue Reading Why This New CVID Research Is The Most Exciting Thing You’ll Hear About Today
Upcoming MF Clinical Trial!

Upcoming MF Clinical Trial!

  • Post author:Kathy Devanny
  • Post published:April 5, 2016
  • Post category:mycosis fungoides/Rare Disease

Mycosis Fungoides (MF) is a rare form of lymphoma that affects usually affects the skin causing inflammation, tumors, plaques, and redness. It only affects 3 to 4 people in a…

Continue Reading Upcoming MF Clinical Trial!
Should This Foundation Explore Promising New Research?

Should This Foundation Explore Promising New Research?

  • Post author:Erica Zahn
  • Post published:October 29, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease

Recently, the Immune Deficiency Foundation (IDF) was invited to try for a grant sponsored by PI CONNECT. The grant would allow the IDF to study the compared effectiveness of antibiotic treatment for…

Continue Reading Should This Foundation Explore Promising New Research?
5 Reasons This Breakthrough HAE Trial Will Make You Horny

5 Reasons This Breakthrough HAE Trial Will Make You Horny

  • Post author:Kiki Jones
  • Post published:October 28, 2015
  • Post category:HAE/Rare Disease

Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…

Continue Reading 5 Reasons This Breakthrough HAE Trial Will Make You Horny
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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