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INTERVIEW: The Charge to Raise Eosinophilic Esophagitis Awareness (Pt. 2)

INTERVIEW: The Charge to Raise Eosinophilic Esophagitis Awareness (Pt. 2)

If you're just joining us, don't forget to take a look at Part 1 of this interview. In Part 1, we discussed Lori and Mary Jo Strobel, what eosinophilic esophagitis (EOE) is,…

Continue Reading INTERVIEW: The Charge to Raise Eosinophilic Esophagitis Awareness (Pt. 2)
New Treatment Approved in EU for Acid Sphingomyelinase Deficiency

New Treatment Approved in EU for Acid Sphingomyelinase Deficiency

According to a story from Globe Newswire, olipudase alfa (marketed as Xenpozyme) has been approved by the European Commission for the treatment of non-CNS related symptoms of acid sphingomyelinase deficiency…

Continue Reading New Treatment Approved in EU for Acid Sphingomyelinase Deficiency
Rare Classroom: Adult-Onset Still’s Disease

Rare Classroom: Adult-Onset Still’s Disease

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

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Promising Findings in Growth Hormone Deficiency Clinical Trial

Promising Findings in Growth Hormone Deficiency Clinical Trial

According to a story from Globe Newswire, the global healthcare company Novo Nordisk recently announced encouraging findings from its phase 3 clinical trial. This study was evaluating somapacitan (marketed as…

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June is Intrahepatic Cholestasis of Pregnancy Awareness Month: Laura’s Story

June is Intrahepatic Cholestasis of Pregnancy Awareness Month: Laura’s Story

The month of June is recognized as Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month, a time to spread awareness about the rare condition among the general public and the medical…

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Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)

Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)

Thanks to Amylyx Pharmaceuticals, Canada becomes the first country worldwide to have access to an ALS drug branded Albrioza (originally AMX0035). According to an article in Yahoo News, the drug…

Continue Reading Canada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)
Zolgensma Safe in Children with SMA Heavier than Clinical Trial Weights

Zolgensma Safe in Children with SMA Heavier than Clinical Trial Weights

In clinical trials evaluating Zolgensma for children with spinal muscular atrophy (SMA), the maximum weight of participants was 18.7 pounds. However, parents with children weighing over that weight might be…

Continue Reading Zolgensma Safe in Children with SMA Heavier than Clinical Trial Weights
Bleach Baths May Improve Severe Atopic Dermatitis Symptoms

Bleach Baths May Improve Severe Atopic Dermatitis Symptoms

In the past, research has shown that bleach baths can be a helpful tool in addressing or relieving symptoms associated with dermatological issues. For example, some doctors suggest the use…

Continue Reading Bleach Baths May Improve Severe Atopic Dermatitis Symptoms
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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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