CEP (Congenital Erythropoietic Porphyria) is an extremely rare genetic disease that causes severe photosensitivity, blistering, scarring, and long-term damage to the skin and eyes. For people like Justin, CEP means living fully covered to survive the sun. It means adapting daily life, losing abilities over time, and facing a disease with no true treatment, only ways to manage the damage. Most people have never heard of CEP. This is why it matters 💜 Sharing Justin’s story is about visibility, un
0:31
FacebookUnited Porphyrias Association
CEP (Congenital Erythropoietic Porphyria) is an extremely rare genetic disease that causes severe photosensitivity, blistering, scarring, and long-term damage to the skin and
United Porphyrias Association. United Porphyrias Association · Original audio. CEP (Congenital Erythropoietic Porphyria) is an extremely rare genetic disease that causes severe photosensitivity, blistering, scarring, and long-term damage to the skin and eyes. For people like Justin, CEP means living fully covered to survive the sun. It means ...
428.7K views4 months ago
Related Products
Erythropoietic Porphyria EPP
Congenital Erythropoietic Porphyria
Fetch Diagrams Erythropoietic Porphyria
#Erythropoietic protoporphyria Symptoms
Quick Take: Dersimelagon in Erythropoietic Protoporphyrias
Quick Take: Dersimelagon in Erythropoietic Protoporphyrias
FacebookApr 11, 2023
Understanding the Underlying Pathophysiology of Erythropoietic Protoporphyria | Dermatology Times
Understanding the Underlying Pathophysiology of Erythropoietic Protoporphyria | Dermatology Times
dermatologytimes.com1 week ago
Top videos
Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
1:48
Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
YouTubeChildren's Hospital Los
330.7K viewsJan 16, 2016
Absolute light intolerance: Erythropoietic Protoporphyria (EPP)
5:06
Absolute light intolerance: Erythropoietic Protoporphyria (EPP)
VimeoCLINUVEL
2.4K viewsDec 21, 2009
Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-sensitivity disorder causing immediate severe pain upon sun exposure, for decades undiagnosed in sunny Saskatoon. Forced to remain indoors, he sought rare disease organizations, leading him to a clinical trial at Massachusetts General Brigham. There, he met Dr. Amy Yeung, an attending physician at Massachusetts General Hospital and Harvard Medical School assistant professor who also has EPP. The trial drug, Bitopertin, decreas
2:53
Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-sensitivity disorder causing immediate severe pain upon sun exposure, for decades undiagnosed in sunny Saskatoon. Forced to remain indoors, he sought rare disease organizations, leading him to a clinical trial at Massachusetts General Brigham. There, he met Dr. Amy Yeung, an attending physician at Massachusetts General Hospital and Harvard Medical School assistant professor who also has EPP. The trial drug, Bitopertin, decreas
TikTokcbcsasknews
4K views2 months ago
Erythropoietic protoporphyria Treatment
“Bitopertin gave my life back” - Brady
0:11
“Bitopertin gave my life back” - Brady
YouTubeUnited Porphyrias Association
30.8K views1 month ago
Sun, genes and skin
19:03
Sun, genes and skin
YouTubeDiscover Dermatology
291 views2 weeks ago
The Real "Vampire" Disease? 🧛‍♂️ | Why Light Burns in Porphyria
2:11
The Real "Vampire" Disease? 🧛‍♂️ | Why Light Burns in Porphyria
YouTubeBiochemistry Bits
1 views1 month ago
Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
1:48
Growing Up ‘Allergic to the Sun’ - …
NATIONALLY RATED HOSPITAL
About this channel
YouTubeChildren's Hospital Los Angeles
Absolute light intolerance: Erythropoietic Protoporphyria (EPP)
5:06
Absolute light intolerance: Erythropoietic Protoporphyria (EPP)
2.4K viewsDec 21, 2009
VimeoCLINUVEL
Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-sensitivity disorder causing immediate severe pain upon sun exposure, for decades undiagnosed in sunny Saskatoon. Forced to remain indoors, he sought rare disease organizations, leading him to a clinical trial at Massachusetts General Brigham. There, he met Dr. Amy Yeung, an attending physician at Massachusetts General Hospital and Harvard Medical School assistant professor who also has EPP. The trial drug, Bitopertin, decreas
2:53
Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-s…
4K views2 months ago
TikTokcbcsasknews
"I was allergic to the sun—so I learned to create my own light."
0:11
"I was allergic to the sun—so I learned to create my own light."
29.3K views10 months ago
YouTubeUnited Porphyrias Association
Want EPP and XLP information created just for you? Join a new resource made just for the EPP and XLP community. #Porphyria #ErythropoieticProtoporphyria #RareDisease | PPIX is Why
0:05
Want EPP and XLP information created just for you? Join a new r…
37.3K views5 months ago
FacebookPPIX is Why
Understanding erythropoietic protoporphyria
1:14
Understanding erythropoietic protoporphyria
1.5K viewsApr 23, 2020
YouTubeThe Photoprotection Channel
Understanding Congenital Erythropoietic Porphyria
31:18
Understanding Congenital Erythropoietic Porphyria
189.5K views2 months ago
TikTokhamiltonfamily796
0:24
For years, sunlight caused burning pain for Ashley
27.4K views6 months ago
YouTubeUnited Porphyrias Association
1:18
Toddler suffers from rare, vampire-like symptoms
1.4M viewsMar 1, 2015
YouTubeUSA TODAY
6:26
Acute intermittent porphyria: Video, Causes, & Meaning | Osmosis
Apr 16, 2019
osmosis.org
3:12
Understanding erythropoietic protoporphyria
4.9K viewsApr 24, 2020
YouTubeThe Photoprotection Channel
0:50
The etiology of erythropoietic protoporphyria
1K viewsJun 28, 2023
YouTubeVJHemOnc – Video Journal of Hematology & H…
1:58
Part One - "Absolute intolerance to light" - Erythropoietic Protoporph…
2.3K viewsSep 7, 2010
YouTubeThe Photoprotection Channel
Recognize Acute Hepatic Porphyria (AHP)
Mar 2, 2020
porphyria.ca
0:46
This Disease Turns People Into Real-Life Vampires
24 views3 weeks ago
YouTubeThat Can't Be Real
1:05
How do patients cope with EPP? #RareDisease #Photosensitivity #…
181 views8 months ago
YouTubeBritish Porphyria Association
9:26
Understanding Erythropoietic Protoporphyria Awareness
4K views4 months ago
TikTokchey_epp
0:33
Erythropoietic protoporphyria (Medical Condition)
207 viewsApr 16, 2015
YouTubeMedical Condition Information
2:11
The Real "Vampire" Disease? 🧛‍♂️ | Why Light Burns in Porphyria
1 views1 month ago
YouTubeBiochemistry Bits
33:33
Porphyria and its types : Medical biochemistry USMLE step 1
24.8K viewsNov 28, 2022
YouTubeDr.G Bhanu Prakash Animated Medical Videos
53:14
The PAINFUL Truth About Living With Erythropoietic Protoporphyria!
1.1K views11 months ago
YouTubeRarely Discussed Podcast
8:09
Porphyria Lab Diagnosis Medical Laboratory Basics: Hematology a…
21 views6 months ago
YouTubeBioScanHub
14:12
Her Classmates Dared Her To Stand In The Sun. Her Skin Melted Off.
2.7K views4 months ago
YouTubeDiagnosis Glitch
1:01
Congenital erythropoietic porphyria ECE
2.7K viewsAug 4, 2024
YouTubeBiochemistry by Dr Rajesh Jambhulkar
0:10
Craig Leppert's Journey with Erythropoietic Protoporphyria
44K views10 months ago
TikTokunited.porphyrias
23:46
Porphyrias
403.6K viewsDec 5, 2019
YouTubeBiochemistry by Dr Rajesh Jambhulkar
5:12
Porphyria, Causes, Signs and Symptoms, Diagnosis and Treatm…
48.9K viewsOct 2, 2021
YouTubeMedical Centric Podcast
24:52
Porphyrias Biochemistry | All Types | With Mnemonics
46.8K viewsNov 15, 2023
YouTubeEssentials of Medical Science (Dr. Mohit Sheor…
6:39
Porphyria Visually Explained
52.8K viewsOct 18, 2022
YouTubeTownsendTeaching
See more videos
Static thumbnail place holder