Our mission is to amplify the rare condition voice. One of the ways we achieve that is through collaborations across the community, from patients and caregivers to industry leaders in treatment research and development. To learn more, click here.
 										
							
							
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this story from our friends at Elephants & Tea. To see the story in its original format, please click here. “Well, good…		
		
 
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	“The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s Lymphoma
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to share this article from our friends at Elephants & Tea. To see the article in its original form, please click here. Dear Cancer,…		
		
 
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	“My Own Worst Enemy” – Anna’s Experience with Hodgkin Lymphoma
 
		 
	
	
								
							
								
								
	
		
			
	
		
			  Editor's Note: Patient Worthy is proud to share this story from GACI Global, originally published by the Italian Osservatorio Malattie Rare (OMaR). ARHR2 – Autosomal Recessive Hypophosphatemic Rickets Type…		
		
 
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	Laura’s Battle Against Rickets
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this from our friends at the Courageous Parents Network. Throughout our lives we are faced with decisions of many kinds. Some involve…		
		
 
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	Navigating Medical Complexity Through Shared Decision-Making
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: We're proud to be the first to share this story by Blair Young Whitworth, a Parent Champion of the Courageous Parents Network. There were so many anxious years…		
		
 
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	The Weight of a Decision
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this story from our friends at the Glanzmann's Research Foundation (GRF). To see the article in its original format, please click here.…		
		
 
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	Sherry Crutchfield’s Journey with Glanzmann Thrombasthenia
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to bring you this story from our friends at the Glanzmann Research Foundation. To see the article in its original format, please click here.…		
		
 
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	Vincenzo’s Journey with Glanzmann Thrombasthenia
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to share this story from our friends at the GRF (Glanzman's Research Foundation). To see the article in its original form, please click here.…		
		
 
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	Jyll’s Journey with Glanzmann Thrombasthenia
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to share this article from our friends at the Fatty Liver Foundation. We get a lot of questions about Tylenol and pain relievers in…		
		
 
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	How Safe Is Tylenol Really? The Answer Is Not As Simple As You May Think
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the article in its original form, please click here. Original author…		
		
 
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	The Unspoken Guilt of Living
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: This article was translated into English from Spanish; there may be inconsistencies or minor errors. Sports and the fight against Dravet syndrome will once again go hand in…		
		
 
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	Spanish Man Plans to Swim from Europe to Africa to Raise Awareness of Dravet Syndrome
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: This opinion piece was originally written by Kim Higbee. The opinions expressed in this article may not be a reflection of Patient Worthy, its employees, or any of…		
		
 
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	Opinion Piece: When the FDA Says No, Families Like Mine Lose More Than Medicine
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this article from our friends at Glanzmann's Research Foundation. To see the article in its original form, please click here. Hello! I…		
		
 
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	Emily’s Story with Glanzmann Thrombasthenia
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this article from the TESS Research Foundation. To see the article in its original form, please click here. TL;DR — the blood-brain…		
		
 
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	What Is the Blood-Brain Barrier? (Part 2)
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this article with permission from the TESS Research Foundation. To see the article in its original form, please click here. TL;DR —…		
		
 
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	What Is the Blood-Brain Barrier? (Part 1)
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this article from our friends at the TESS Research Foundation. To see the article in its original format, please click here. TL;DR:…		
		
 
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	Differences Between a Gene Therapy Clinical Trial and a Cure
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this article from our friends at the TESS Research Foundation. To see the article in its original format, please click here. TL;DR: CRISPR…		
		
 
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	What Is CRISPR?
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to bring you this article from our friends at the Tess Research Foundation. To see the article in its original form, please click here.…		
		
 
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	What is a Variant Database?
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to bring you this article, shared with us by our friends at the Tess Research Foundation. To see this article in its original state,…		
		
 
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	All About Genetic Sequencing
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the original article, please click here. One day, many years ago,…		
		
 
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	Controlling The Response After Cancer
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is proud to share this story from our friends at No Stomach for Cancer. To see the article in its original form, please click here. In…		
		
 
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	Cailyn’s Stomach Cancer Journey
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: This article was shared with Patient Worthy by our friends at PDSA.org. To see the article in its original format, please click here. I had heard of lupus…		
		
 
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	Cathy the Lupus and ITP Warrior
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Acknowledgement: Patient Worthy is honored to share this story from our friends at GACI Global. To see the article in its original format, please click here. Born on World Heart…		
		
 
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	Ruben’s GACI Story
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Acknowledgement: Patient Worthy is proud to share this article from our friends at Elephants & Tea. To see the article in its original form, please click here. I wish someone…		
		
 
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	Cancer: It Sucks at Any Age
 
		 
	
	
								
							
								
								
	
		
			
	
		
			Editor's Note: Patient Worthy is honored to share this article from our friends at Courageous Parents Network. Parents of well children regularly receive anticipatory guidance–proactive communication about what’s coming in…		
		
 
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	Anticipatory Guidance: Proactive Communication About What to Expect