TheHealthSite

Teddi Mellencamp diagnosed with Stevens-Johnson syndrome: What to know about the rare skin disorder

After getting diagnosed with Stevens-Johnson sydrome, Teddi Mellencamp spreads awareness about the rare skin condition to ...

Mom noticed a faint discoloration on her 7-year-old’s skin — months later he was diagnosed with a rare disorder that slowly destroys skin

The first sign was so small it barely registered. A faint patch of discoloration on 7‑year‑old Lukas Caldwell’s cheek looked ...
Undark Magazine

For a Rare Disorder, Is Language Complicating Care?

A skin condition tied to delusions is posing a riddle for doctors: What to do when a diagnosis causes offense?
Yahoo

Gene Therapy Marks a Turning Point for Rare Skin Diseases

This article is part of Nature Outlook: Skin, an editorially independent supplement produced with financial support from LEO Pharma. About this content. KaDee Troop is the mother of seven adopted ...

At 7, His Mom Noticed a Faint Discoloration. Months Later, He Was Diagnosed with a Rare Disorder That Slowly Ate His Skin (Exclusive)

Parry-Romberg Syndrome (PRS), a rare autoimmune disorder that gradually destroys soft tissue on one side of the face.

Meet Suma Krishnan: Indian-origin scientist named among America’s greatest innovators for a breakthrough therapy to treat rare skin disorder

A groundbreaking topical gene therapy for 'butterfly skin disease' has transformed rare disease treatment. Suma Krishnan's ...

Easton Friedel thanks you for following his journey with a rare skin disease

Easton Fridel wants to thank you for following his journey with a rare skin diseaseWhen he was born, he captivated Central New Yorkers because of his dire medic ...
WLTX19

'The toughest little girl' | Walk honors Brewer baby lost to rare skin disease

BREWER, Maine — A community of friends and strangers is rallying behind a Brewer family after their baby daughter, Elliana Campbell, died from a rare and incurable skin disease called Epidermolysis ...
BusinessMirror

No rare disease should go untreated–experts

While the vast majority of rare diseases lack approved, specific treatments or cures, health experts emphasize the importance of regular consultations and treatments that not only manage symptoms but ...
University of California

From Rett and Pitt-Hopkins to ALS: 5 rare diseases UC San Diego researchers are tackling in the lab

Researchers at the Sanford Stem Cell Institute have taken the fight against rare diseases to the lab, to patients’ bedsides ...

Rare sun disorder kept Saskatoon man indoors for decades until a clinical trial changed everything

Kris Kinar lived 30 years with EPP, spending most of his time indoors. After a tough diagnosis in his mid-30s, he thought he ...