United Porphyrias Aims to Raise Awareness,
Research and Support for Rare Disease
BETHESDA, Md., May 17, 2024
/PRNewswire/ -- United Porphyrias Association (UPA) is proud to
announce May 18 as Global
Porphyria Day. Global Porphyria Day is intended to create
awareness that prompts action for improved healthcare, increased
research, and enhanced support for individuals with porphyria. The
campaign encourages wearing and promoting the color purple, the
color of porphyria, stemming from the Greek word "porphyra", which
means purple.
GLOBAL PORPHYRIA DAY IS MAY 18 - United Porphyrias Aims to Raise
Awareness, Research and Support for Rare Disease
Porphyria is a group of disease of eight rare, genetic
disorders. People living with a porphyria have changes to certain
genes involved in development of heme, an essential element
bringing oxygen into the bloodstream. Each type of porphyria is
caused by a defect in a specific enzyme responsible for heme
production, causing a buildup of other compounds, called
porphyrins. The buildup of porphyrins causes different types of
porphyria and associated symptoms, including significant pain.
These symptoms can be broadly divided into two categories: acute
(sudden and severe) and cutaneous (skin related.)
Symptoms range from severe abdominal pain, nausea, vomiting, and
effects on the nervous system in acute porphyria to
photosensitivity which can cause skin pain, burning, tingling,
itching, swelling, blistering, infections, scarring in cutaneous
porphyria.
UPA supports global efforts to raise awareness of porphyria
improving diagnosis and treatment of these rare diseases and
providing critical support to the porphyria community. UPA's
internationally renowned scientific advisory board of porphyria
experts works closely with the patient community to make
advances.
"The porphyrias are often misdiagnosed and misunderstood by the
medical community," said UPA President and porphyria caregiver,
Kristen Wheeden, "Our work leads
directly to earlier diagnosis, better patient care, increased
research, and access to therapeutics. Everyone has the right to
live without pain."
The United Porphyrias Association is committed to improving the
quality of life of the porphyria patient community and is
relentlessly focused on advancing disease awareness, research, and
therapies in all the porphyrias. For more information on Porphyria,
Global Porphyria Day, and the United Porphyrias Association, visit
www.porphyria.org.
Contact:
Kristen Wheeden, President, United
Porphyria Association
Phone: 1-800-868-1292 Email: kristen@porphyria.org
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SOURCE United Porphyrias Association