UPA & Advocacy
The color that represents porphyria awareness.
What is purple?
Name one thing you or the patient you came with does to prevent porphyria symptoms.
No wrong answers!
Name a TV show that mentions porphyria.
What is House, ER, Grey's Anatomy, Scrubs, etc...? [Many possible answers!]
True or False: All porphyrias are inherited in an autosomal recessive pattern.
False
The date of Global Porphyria Day
What is May 18th?
What the acronym APEX stands for.
What is the American Porphyrias Expert Collaborative?
This diet strategy can help prevent AHP attacks.
What is a high-carbohydrate diet?
The royal monarch who was speculated to have had porphyria.
Who was King George III?
The photosensitive substance that builds up in EPP and XLP.
What is protoporphyrin?
The only porphyria that is most commonly acquired rather than inherited.
What is Porphyria Cutanea Tarda (PCT)?
The date of the first FDA meeting to advocate for CEP treatments and research.
What is Tuesday Oct 14?
This medication on the market for EPP/XLP works by mimicking the body's natural alpha-melanocyte simulating hormone (a-MSH).
What is Scenesse?
The animal that represents rare disease.
What are zebras?
This organ is primarily affected in the acute porphyrias.
What is the liver?
This porphyria is also known as "Swedish Porphyria" because of the high prevalence due to a founder effect.
What is Acute Intermittent Porphyria (AIP)?
The UPA affiliate in South America, Porfirias Unidas Latinoamerica, is located in this South American country.
What is Peru?
The porphyria that is treated with phlebotomy.
TV shows often diagnose AIP because of this feature of the disease.
What is urine turning purple in sunlight.
This organ is primarily affected in the cutaneous porphyrias.
What is the bone marrow?
The most common porphyria in South Africa.
What is Variegate Porphyria (VP)?
The year the Orphan Drug Act was passed.
What is 1983?
The name of the protein that givosiran silences.
What is ALAS-1?
This American quiz show once included porphyria in the “Rare Diseases” category.
What is Jeopardy!?
The rarest acute porphyria with high ALA but normal PBG.
What is ALA dehydratase deficiency porphyria (ADP)?
The International Porphyria Patient Network is headquartered in this European country.
What is Norway?