Pompe Disease News

Pompe Disease News We are dedicated to sharing the latest news, research, and Pompe disease patient perspectives.

A well-balanced diet can help you feel your best as you navigate Pompe and its daily challenges. Take a look at what res...
01/16/2025

A well-balanced diet can help you feel your best as you navigate Pompe and its daily challenges. Take a look at what research suggests about certain approaches that may be beneficial: https://bit.ly/4hdQ01a

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/429elRs
01/11/2025

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/429elRs

Traveling is stressful all on its own — without the added burden of a rare disease like LOPD and all of its consideratio...
01/09/2025

Traveling is stressful all on its own — without the added burden of a rare disease like LOPD and all of its considerations. Prepare accordingly by keeping these tips in mind: https://bit.ly/3C2XCVk

The team at Pompe Disease News recaps the top 10 stories on Pompe disease scientific advances, treatment progresses, and...
01/07/2025

The team at Pompe Disease News recaps the top 10 stories on Pompe disease scientific advances, treatment progresses, and clinical trials. https://bit.ly/3W8pE8R

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/3P4vKTA
12/21/2024

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/3P4vKTA

A common LOPD symptom, fatigue can have a major impact on daily life. Explore ways to conserve your energy and take back...
12/19/2024

A common LOPD symptom, fatigue can have a major impact on daily life. Explore ways to conserve your energy and take back control here: https://bit.ly/4iAb4QS

Genetic panel testing can tell Pompe disease from muscular dystrophy, which could help offer patients an accurate diagno...
12/17/2024

Genetic panel testing can tell Pompe disease from muscular dystrophy, which could help offer patients an accurate diagnosis, per a new study. https://bit.ly/4gDgysw

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/4iBJRNA
12/14/2024

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/4iBJRNA

🌟 Exciting News! 🌟 We are proud to partner with the Muscular Dystrophy Association. This collaboration will leverage the...
12/12/2024

🌟 Exciting News! 🌟 We are proud to partner with the Muscular Dystrophy Association. This collaboration will leverage the strengths and breadth of both organizations to provide comprehensive information, news and resources, while amplifying the voices of those impacted by rare diseases. https://bit.ly/3BgMi7L

About the Muscular Dystrophy Association (MDA) - The #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. https://www.mda.org/

LOPD patients sometimes experience breathing difficulties and other respiratory issues. See why and what may help here: ...
12/12/2024

LOPD patients sometimes experience breathing difficulties and other respiratory issues. See why and what may help here: https://bit.ly/3Bgvs8Z

A non-invasive MRI detected glycogen accumulation in Pompe mouse model muscles, showing its potential as an assessment t...
12/10/2024

A non-invasive MRI detected glycogen accumulation in Pompe mouse model muscles, showing its potential as an assessment tool for patients. https://bit.ly/49B5VnK

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/49oErS0
12/07/2024

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/49oErS0

This adult-onset form of Pompe generally manifests at some point after 1 year of age. Learn about associated symptoms, d...
12/05/2024

This adult-onset form of Pompe generally manifests at some point after 1 year of age. Learn about associated symptoms, diagnosis, and more here: https://bit.ly/3ZxgsNd

Fewer than 40 of 3,000 people screened for Pompe were found to have genetic mutations, highlighting the challenges of di...
12/03/2024

Fewer than 40 of 3,000 people screened for Pompe were found to have genetic mutations, highlighting the challenges of diagnosing the disease. https://bit.ly/3VmPLIz

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/3OBgCg5
11/30/2024

Here is this week's most-read article featured on our website. Are you caught up? https://bit.ly/3OBgCg5

Wondering what exercises are best with Pompe? What about precautions to take when exercising? A board-certified clinical...
11/28/2024

Wondering what exercises are best with Pompe? What about precautions to take when exercising? A board-certified clinical specialist in neurologic physical therapy offers her thoughts: https://bit.ly/3Z5lv63

Researchers say the Pombiliti + Opfolda combo shows potential benefits over earlier ERTS for Pompe disease. https://bit....
11/26/2024

Researchers say the Pombiliti + Opfolda combo shows potential benefits over earlier ERTS for Pompe disease. https://bit.ly/414yace

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Pompe Disease News
Pompe Disease News

One patient, diagnosed with LOPD nearly a decade ago, shares an awkward-turned-teachable moment about life with the rare — and sometimes invisible — disease: https://bit.ly/3Ax6j9i #Pompe #PompeDisease #PompeDiseaseAwareness #LivingWithPompeDisease

Maximizing Nutrition with Pompe
Maximizing Nutrition with Pompe

For Dwayne Wilson, managing nutrition with Pompe involves adding in all the protein and amino acids he can to help combat muscle deterioration. He shares how he does it: https://bit.ly/3MrgKOx #Pompe #PompeDisease #PompeDiseaseAwareness #livingwithpompedisease

Sandra D. Young: Energy budgeting for quality of life
Sandra D. Young: Energy budgeting for quality of life

Energy budgeting is an important part of living with Pompe. One patient advocate talks about how she decides what she spends this precious resource on: https://bit.ly/4dwjsha #Pompe #PompeDisease #PompeDiseaseAwareness #LivingWithPompeDisease

Heather Shorten: Wearing tech for peace of mind
Heather Shorten: Wearing tech for peace of mind

Diagnosed with LOPD in 2015, Heather Shorten touches on the tech that helps her — and her family — keep track of her symptoms. Watch here: https://bit.ly/3SADoqT #Pompe #PompeDisease #LOPD #PompeDiseaseAwareness #LivingWithPompeDisease

Heather Shorten: Negotiating Pompe treatment strategies
Heather Shorten: Negotiating Pompe treatment strategies

How comfortable do you feel telling your doctor no to a proposed treatment plan? Heather Shorten admits it’s not easy. She shares tips she’s learned: https://bit.ly/4bSOEpn #Pompe #PompeDisease #PompeDiseaseAwareness #LivingwithPompeDisease

Dwayne Wilson: Utilizing creative Pompe aids
Dwayne Wilson: Utilizing creative Pompe aids

Dwayne Wilson’s Pompe has allowed his creative side to shine. He shares some life hacks he’s discovered for living with the disease: #Pompe #PompeDisease #LOPD #PompeDiseaseAwareness #LivingwithPompeDisease

Dwayne Wilson: Utilizing creative Pompe aids
Dwayne Wilson: Utilizing creative Pompe aids

Dwayne Wilson’s Pompe has allowed his creative side to shine. He shares some life hacks he’s discovered for living with the disease: https://bit.ly/4cGcea1 #Pompe #PompeDisease #LOPD #PompeDiseaseAwareness #LivingwithPompeDisease

Sandra D. Young: Energy budgeting for quality of life
Sandra D. Young: Energy budgeting for quality of life

How do you budget your energy with Pompe? Sandra D. Young, diagnosed in 2016, shares her life philosophy on what’s most deserving of her energy. https://bit.ly/4eQY1sB #Pompe #PompeDisease #LOPD #PompeDiseaseAwareness #LivingwithPompeDisease

This week on Pompe Disease News
This week on Pompe Disease News

Here's a recap of the news and columns we featured this week. Head to our website to read them all: https://bit.ly/3wacQEK #PompeDisease #PompeResearch #PompeDiseaseAwareness #LivingwithPompeDisease

Heather Shorten: Wearing tech for peace of mind
Heather Shorten: Wearing tech for peace of mind

Heather Shorten, diagnosed nearly a decade ago, shares the tech she depends on daily to help monitor her FA: https://bit.ly/3W8RCk3 #FriedreichsAtaxia #FAAwareness #LivingWithFA #FACommunity

This week on Pompe Disease News
This week on Pompe Disease News

Here's a recap of the news and columns we featured this week. Head to our website to read them all: https://bit.ly/3wacQEK #PompeDisease #PompeResearch #PompeDiseaseAwareness #LivingwithPompeDisease

This week on Pompe Disease News
This week on Pompe Disease News

Here's a recap of the news and columns we featured this week. Head to our website to read them all: https://bit.ly/3wacQEK #PompeDisease #PompeResearch #PompeDiseaseAwareness #LivingwithPompeDisease

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