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PROS is a spectrum of at least 13 rare conditions driven by mutations in the PIK3CA gene, typically associated with tissue overgrowth, vascular malformations, and neurological disorders

New initiative offers innovative educational resources for parents, caregivers, and people living with PROS, a rare disease often associated with physical and psychosocial challenges

Novartis sought insights from an Advisory Committee of advocacy experts, patients, and caregivers to understand the community’s needs and co-create content, including a comic book for children with PROS

“Meet The PROS” reinforces Novartis commitment to supporting people affected by rare diseases

East Hanover, August 31, 2021— Novartis today announced the launch of “Meet The PROS,” an initiative to raise awareness and offer new educational resources for PIK3CA-Related Overgrowth Spectrum (PROS), a group of rare conditions caused by mutations in the PIK3CA gene.1 PROS conditions are diverse, and are typically characterized by atypical, visible growths and anomalies in the blood vessels and lymphatic system.1 People living with PROS often experience a multitude of physical, emotional, and psychosocial challenges, such as chronic pain and mobility issues, diagnosis uncertainty, and difficulty finding clothes or shoes that fit.1-4

“PROS conditions can have potentially debilitating physical impacts and are often associated with a range of emotional and social challenges for patients and their families. Through the Meet The PROS initiative, we aim to answer the community’s call for more awareness and educational resources,” said Reshema Kemps-Polanco, Head of Novartis Oncology, US. “We’re grateful for the collaboration and insights from our Meet The PROS advisors. Their contributions are invaluable as we continue our efforts to reimagine medicine for people living with rare diseases.”

Novartis collaborated with advocates, caregivers and patients to create an educational initiative to help young people with PROS learn and talk about their condition. The initiative includes an educational comic book, conversation guides, fact sheets and other resources, available now at understandingpros.com/talking-about-pros/.

Hear from "Meet the Pros" Advisors

Learn more about "Meet The PROS" initiative and get connected to resources by visiting understandingpros.com.

About PIK3CA-Related Overgrowth Spectrum (PROS) Conditions

PROS is a wide-ranging spectrum of disorders caused by a mutation in the PIK3CA gene.1 PROS conditions can look different from each other in size, shape, and type of growth or malformation based on where in the body the mutation is found.1,5 PROS can disrupt mobility and cognitive function in some patients and may lead to life-threatening complications.6-8

The PROS classification was proposed at a National Institutes of Health workshop in 2013 to unite a group of rare overgrowth conditions caused by PIK3CA mutations.1,5 Specific conditions associated with PROS include KTS, CLOVES syndrome, ILM, MCAP/M–CM, HME, DMEG, HHML, FIL, FAVA, macrodactyly, muscular HH, FAO, CLAPO syndrome and epidermal nevus, benign lichenoid keratosis, or seborrheic keratosis.1,5


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About Novartis

Located in East Hanover, NJ, Novartis Pharmaceuticals Corporation – an affiliate of Novartis – is reimagining medicine to improve and extend people’s lives. As a leading global medicines company, we use innovative science and digital technologies to create transformative treatments in areas of great medical need. In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Novartis employs nearly 15,500 people in the United States. For more information, please visit https://www.novartis.us.

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  1. Keppler-Noreuil KM, Rios JJ, Parker VER, et al. PIK3CA-related overgrowth spectrum (PROS): diagnostic and testing eligibility criteria, differential diagnosis, and evaluation. Am J Med Genet A. 2015;167A(2):287-295.
  2. Harvey JA, Nguyen H, Anderson KR, et al. Pain, psychiatric comorbidities, and psychosocial stressors associated with Klippel-Trenaunay syndrome. J Am Acad Dermatol. 2018;79(5):899-903.
  3. Breugem CC, Merkus MP, Smitt JH, Legemate DA, van der Horst CM. Quality of life in patients with vascular malformations of the lower extremity. Br J Plast Surg. 2004;57(8):754-763.
  4. Fahrni JO, Cho EY, Engelberger RP, Baumgartner I, von Känel R. Quality of life in patients with congenital vascular malformations. J Vasc Surg Venous Lymphat Disord. 2014;2(1):46-51.
  5. Ko JM. Genetic syndromes associated with overgrowth in childhood. Ann Pediatr Endocrinol Metab. 2013;18(3):101-105.
  6. Keppler-Noreuil KM, Sapp JC, Lindhurst MJ, et al. Clinical delineation and natural history of the PIK3CA-related overgrowth spectrum. Am J Med Genet A. 2014;164A(7):1713-1733.
  7. Parker VER, Keppler-Noreuil KM, Faivre L, et al. Genet Med. 2019;21(5):1189-1198.
  8. Mirzaa G, Conway R, Graham JM Jr, Dobyns WB. PIK3CA-related segmental overgrowth. In: Adam MP, Ardinger HH, Pagon RA, et al., eds. GeneReviews® [Internet]. Seattle, WA: University of Washington, Seattle; 1993-2019.

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