Marfan Syndrome – Patient Worthy

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Rare Community Profiles: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference

Post author:Jessica Lynn
Post published:August 27, 2024
Post category:Loeys-Dietz syndrome Marfan Syndrome

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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World Pneumothorax Day 2024: Spreading Rare Disease Awareness

Post author:James Moore
Post published:June 24, 2024
Post category:Birt-Hogg-DubÃ© syndrome (BHD)Ehlers-Danlos Syndrome Loeys-Dietz syndrome Lymphangioleiomyomatosis Marfan Syndrome Pneumothorax

June 24, 2024 is being recognized as World Pneumothorax Day, a time for spreading awareness about pneumothorax among the general public and in the medical field. Pneumothorax is a condition…

The Marfan Foundation’s Global Virtual Conference

Post author:James Moore
Post published:June 17, 2024
Post category:

The Global Virtual Conference June 17-22, 2024 The Marfan Foundation’s Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers, and researchers from…

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February 2024: Raise Awareness for Marfan Awareness Month

Post author:Jessica Lynn
Post published:February 9, 2024
Post category:Marfan Syndrome

Have you ever heard of Marfan syndrome? This rare inherited disorder affects connective tissue in the body. Connective tissue supports organs and bodily structures like your skeleton, blood vessels, eyes,…

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Help Raise Funds for this Girl with Marfan Syndrome to Receive Open-Heart Surgery in London

Post author:Jessica Lynn
Post published:March 20, 2023
Post category:Marfan Syndrome

Eight years: that’s how long it has been since Moxie Garrison was diagnosed with Marfan syndrome. Now nine years old, the spunky and resilient third grader approaches every challenge head-on.…

February is Marfan Syndrome Awareness Month!

Post author:Jessica Lynn
Post published:February 7, 2023
Post category:Marfan Syndrome Timely

Have you ever heard of Marfan syndrome? This rare inherited disorder affects connective tissue (fibers that support and anchor organs and other bodily structures) throughout the body. Marfan syndrome most…

Patients With Marfan Syndrome Associated with an Aortic Aneurysm or Dissection Prove to Have a Higher Risk of Periodontal Disease

Post author:Alyssa Stevens
Post published:April 7, 2022
Post category:Marfan Syndrome

According to a recent article, the results of a new study shows that patients that are diagnosed with Marfan syndrome and an aortic aneurysm or dissection are at a…

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Girl with Marfan Syndrome Named IWK Founders Club Ambassador

Post author:Jessica Lynn
Post published:March 14, 2022
Post category:Marfan Syndrome

When Kacey Lamphier was just a child, her father Edward passed away from a ruptured aorta. Following his death, Kacey and her family were also tested. It was during this…

February is Marfan Syndrome Awareness Month!

Post author:Trudy Horsting
Post published:February 15, 2022
Post category:Marfan Syndrome

The Marfan Foundation has a mission to improve the quality of life for patients living with Marfan syndrome and other aortic and vascular conditions. This month, in honor of Marfan Syndrome…

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Biomarker For Acute Aortic Syndrome May be Especially Important To Evaluate in Connective Tissue Disorders

Post author:Trudy Horsting
Post published:January 11, 2022
Post category:Rare Disease

A new study has demonstrated that plasma desmosine could be an acute aortic syndrome biomarker. This also means it could be a potential diagnostic tool. The findings from this study…

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College Student Raises Marfan Syndrome Awareness

Post author:Jessica Lynn
Post published:December 17, 2021
Post category:Marfan Syndrome

Allegra Sturdevant, age 21, averages thousands of views on her TikTok videos, many of which describe her experiences with Marfan syndrome. According to an article in The Daily Universe, the…

Ride for Their Lives: Biking to Fight Against Climate Change

Post author:Kendall Mason
Post published:October 27, 2021
Post category:Marfan Syndrome Rare Disease

Climate change is an issue that has seen a lot of activism from the younger generations, as they will have to grow up and handle more of the burdens it…

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Marfan Syndrome Patient Has Been Waiting Years for Urgent Surgery

Post author:James Moore
Post published:October 25, 2021
Post category:Marfan Syndrome

According to a story from echolive.ie, ten year old Adam Terry from Cork, Ireland, has directly appealed to Micheal Martin, the Taoiseach (or prime minister) of the country in order…

The Doctor Mistakenly Examined An Eight-Year-Old X-ray; A Teenager Died Four Months Later

Post author:Rose Duesterwald
Post published:September 17, 2021
Post category:Marfan Syndrome

Micah Gillings of Cambourne, Cambridgeshire was nineteen years old when he was diagnosed with an enlarged heart as evidenced in an X-ray taken in January 2020. An article appeared this…

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February is Marfan Syndrome Awareness Month: Spreading Rare Disease Awareness

Post author:James Moore
Post published:February 9, 2021
Post category:Marfan Syndrome

February is recognized as Marfan Syndrome Awareness Month, which is an event intended to help spread awareness about Marfan syndrome among the general public and in the medical field. This…

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Correlation Between Marfan Syndrome and Pregnancy Related Arterial Dissections

Post author:Trudy Horsting
Post published:August 13, 2020
Post category:Ehlers-Danlos Syndrome Marfan Syndrome

Arterial Dissection Arterial dissections refer to the tearing of the inner wall of an artery. Pregnancy creates stress on the body's blood vessels and in rare cases dissections can occur.…

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Scares That Care Virtual Charity Event Supporting Marfan Syndrome Patient to Take Place August 1st

Post author:Trudy Horsting
Post published:July 28, 2020
Post category:Breast Cancer Marfan Syndrome Rare Disease

Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…

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On July 1, the Marfan Foundation and Loeys-Dietz Syndrome Foundation Will Officially Partner Up

Post author:Jessica Lynn
Post published:June 12, 2020
Post category:Loeys-Dietz syndrome Marfan Syndrome Timely

Education, research, support, and patient advocacy: these are just four of the amazing things that rare disease or disorder foundations offer. Many foundations seek to offer programs and resources to…

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This Marfan Syndrome Patient Received a Successful Full Dental Prosthesis

Post author:Trudy Horsting
Post published:May 22, 2020
Post category:Marfan Syndrome

A recent report has documented a positive case study of a potential treatment option for one of the complications Marfan syndrome can cause. This report was published in the Journal of Oral Implantology. …

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Study to Investigate the Development of Lung Disease in Connective Tissue Disorders

Post author:James Moore
Post published:September 27, 2019
Post category:Ehlers-Danlos Syndrome Marfan Syndrome Rare Disease Systemic Sclerosis

A study record from clinicaltrials.gov is investigating the appearance of lung problems in patients with disorders affecting connective tissue. While prior research has documented the appearance of interstitial lung disease…

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Marfan and Ehlers-Danlos Patients May Want to Avoid This Class of Antibiotics

Post author:James Moore
Post published:January 8, 2019
Post category:Ehlers-Danlos Syndrome Marfan Syndrome

According to a story from WebMD, the US Food and Drug Administration recently issued a warning about a class of antibiotic drugs called fluoroquinolones. They have been linked to an…

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Incredible Athlete with Marfan Syndrome Seeks Shot at NBA

Post author:Samuel Sachs
Post published:September 24, 2018
Post category:Marfan Syndrome

Isaiah Austin is a name many sports fans may be unfamiliar with. In 2014 that may have been a different story. Austin played basketball at Baylor. Standing 7’1”, with surprising…

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This Drug Could Reduce The Danger of a Potentially Lethal Complication of Marfan Syndrome

Post author:James Moore
Post published:September 20, 2018
Post category:Marfan Syndrome

According to a story from Healio, a recent study found that irbesartan, marketed under the name Avapro, can help reduce the rate at which the aorta, the largest blood vessel…

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Avapro Can Slow Aortic Dilation in Marfan Syndrome Patients, Study Says

Post author:James Moore
Post published:August 31, 2018
Post category:Marfan Syndrome

According to a story from Medpage Today, a recent study found that the drug Avapro, which is commonly used to treat high blood pressure, could also slow down the dilation…

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New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms

Post author:James Moore
Post published:July 20, 2018
Post category:Ehlers-Danlos Syndrome Marfan Syndrome

According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…

Get Involved

Rare Community Profiles: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference

World Pneumothorax Day 2024: Spreading Rare Disease Awareness

The Marfan Foundation’s Global Virtual Conference

February 2024: Raise Awareness for Marfan Awareness Month

Help Raise Funds for this Girl with Marfan Syndrome to Receive Open-Heart Surgery in London

February is Marfan Syndrome Awareness Month!

Patients With Marfan Syndrome Associated with an Aortic Aneurysm or Dissection Prove to Have a Higher Risk of Periodontal Disease

Girl with Marfan Syndrome Named IWK Founders Club Ambassador

February is Marfan Syndrome Awareness Month!

Biomarker For Acute Aortic Syndrome May be Especially Important To Evaluate in Connective Tissue Disorders

College Student Raises Marfan Syndrome Awareness

Ride for Their Lives: Biking to Fight Against Climate Change

Marfan Syndrome Patient Has Been Waiting Years for Urgent Surgery

The Doctor Mistakenly Examined An Eight-Year-Old X-ray; A Teenager Died Four Months Later

Correlation Between Marfan Syndrome and Pregnancy Related Arterial Dissections

Scares That Care Virtual Charity Event Supporting Marfan Syndrome Patient to Take Place August 1st

On July 1, the Marfan Foundation and Loeys-Dietz Syndrome Foundation Will Officially Partner Up

This Marfan Syndrome Patient Received a Successful Full Dental Prosthesis

Study to Investigate the Development of Lung Disease in Connective Tissue Disorders

Marfan and Ehlers-Danlos Patients May Want to Avoid This Class of Antibiotics

Incredible Athlete with Marfan Syndrome Seeks Shot at NBA

This Drug Could Reduce The Danger of a Potentially Lethal Complication of Marfan Syndrome

Avapro Can Slow Aortic Dilation in Marfan Syndrome Patients, Study Says

New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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