Rare Community Profiles: St. Jude Children’s Research Hospital Opens 45,000 Square Foot “Family Commons” to Support and Offer Comfort to Families
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Rare Community Profiles: St. Jude Children’s Research Hospital Opens 45,000 Square Foot “Family Commons” to Support and Offer Comfort to Families

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

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Mutual Trust Between Doctors and Parents of Children with Rare Diseases Means Optimum Care for the Child

The complexity of rare diseases makes communication between adults involved with the care of these children a vital tool. Communication and mutual trust are of the utmost importance. About the…

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Eyedrops Recalled After P. Aeruginosa Infections Killed 3, Injured 65
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Eyedrops Recalled After P. Aeruginosa Infections Killed 3, Injured 65

  Ezri Care Artificial Tears, as well as nine other ophthalmologic brands that create artificial tears or eyedrops, have been linked to dangerous Pseudomonas aeruginosa infections in people across sixteen different…

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Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards
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Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards

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

Continue Reading Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards
New Rare Disease Network Launches in Ireland
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New Rare Disease Network Launches in Ireland

According to a story from sciencex.com, Queen's University Belfast, University College Dublin, and a team of 33 other partners have come together to start the All-Ireland Rare Disease Interdisciplinary Research…

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Malta’s National Alliance for Rare Diseases Creates First Rare Disease-Focused Children’s Book
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Malta’s National Alliance for Rare Diseases Creates First Rare Disease-Focused Children’s Book

It’s incredibly important to raise rare disease awareness, spread education, and contribute to a more inclusive and equitable world. One of the best ways to start? Through children. Teaching the…

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A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 3)
Photo courtesy of Sharon and Katie Brown

A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 3)

Read Parts 1 and 2 of Katie's story, where we discuss the diagnostic journey, precocious puberty, and Katie's ZMYM2-related disorder diagnosis. Potential ZMYM2 Symptoms and the Need for Research The geneticist mentioned that symptoms…

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A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 2)
Photo courtesy of Sharon and Katie Brown

A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 2)

Before you continue reading, make sure to check out Part 1 of Katie's story.  True Precocious Puberty: The First Official Diagnosis The endocrinologist first ran a blood test, later followed with a…

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A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 1)
Photo courtesy of Sharon and Katie Brown

A Mother’s Love and the Dogged Determination to Advance ZMYM2-Related Disorder Research: Sharon and Katie’s Story (Pt. 1)

Katie Brown, age 15, loves learning Spanish, swinging, and special effects makeup. In the future, she is considering a possible career as a writer or a special effects artist; she…

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