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Duchenne Muscular Dystrophy

Confronting Duchenne Muscular Dystrophy as a Family

Written by Chuck Howe Nothing in life gives me greater joy than seeing my grandchildren be happy and thrive. You can imagine the heartbreak and

Breast Cancer

Jaime’s Story: Invasive Lobular Carcinoma

“Fate whispers to the warrior, ‘You cannot withstand the storm.’ The warrior whispers back, ‘I am the storm.” -Jake Remington This is Jaime Gibbons’ favorite

Alzheimer's disease

His Alzheimer’s at 19 Continues to be a Mystery

In 2023 a 19-year-old male teenager was suffering from memory decline that first began when he was 17 years of age. His cognitive losses continued

Colorectal cancer

The Ripple Effect of My Colorectal Cancer Journey: How One Small Moment Can Change Your Life

Written by Yla Flores Have you ever experienced a seemingly small moment that ended up changing your life forever? Whether it’s turning left instead of

Parkinson's Disease

Could This Cancer Drug Play a Role in Parkinson’s Treatment?

A protein called Aplp1 is now on the radar for its ability to spread material in the brain that may be responsible for Parkinson’s disease.

Diabetes mellitus- transient neonatal

Study: Tirzepatide Lowers Risk of Pancreatitis and Diabetic Retinopathy vs GLP-1s

According to a story from Healio, analysis of the FDA Adverse Events Reporting System database indicates that tirzepatide has a superior safety profile when compared

homocystinuria

October is HCU Awareness Month: Spreading Rare Disease Awareness

HCU Network America is a nonprofit organization dedicated to supporting patients with homocystinuria (HCU) and finding a cure. This October, the group is organizing HCU

Melanoma

NED for 7 Years: Colleen’s Inspiring Melanoma Story

Colleen’s remarkable journey with metastatic melanoma serves as a powerful testament to the resilience of the human spirit. Diagnosed in April 2016 with stage IV

Phenylketonuria

Reflections of a PKU Advocate

Written by Kevin Alexander, Storyteller, Musician, PKU Advocate, Podcaster “I’m not trying to live a ‘normal’ life. Normal is overrated. I’m trying to live

BRCA-mutated Breast Cancer

Podcast Episode: Jasmine Souers, Missing Pink Breast Cancer Alliance

In recognition of Breast Cancer Awareness Month, we are taking you back to this top episode from last year! Colby and Nia Maya sit down

Alzheimer disease type 3

When Might You Consider Genetic Testing for Alzheimer’s Disease?

This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome

Breast Cancer

Watch: Six Years of Survivorship – Jessica’s Breast Cancer Story

Jessica is coming up on six years of breast cancer survivorship. She speaks to the importance of performing self-exams, the myth that “you’re too young

Congenital Adrenal Hyperplasia

WHAT THE C@H?!: How This Educational Initiative Supports the Congenital Adrenal Hyperplasia (CAH) Community

For over three decades, Neurocrine Biosciences, Inc. has been working to support individuals with neurological, neuroendocrine and neuropsychiatric disorders through the development of breakthrough treatment

Neurofibroma

NDA for NF1-PN Treatment Charges Ahead with Priority Review

According to a press release from GlobeNewswire, the biopharmaceutical company SpringWorks Therapeutics recently announced that the US Food and Drug Administration (FDA) has granted the

Rare Disease

Discovery of More Compact Cas Protein Heralds Progress for Gene Therapy

Researchers discovered a version of the Cas protein that fits into adeno-associated viruses (AAVs). This virus can be engineered to deliver targeted therapy to cells