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07/16/2024 11:44 AM
Pennsylvania House of Representatives
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House of Representatives
Session of 2023 - 2024 Regular Session


Posted: May 7, 2024 04:16 PM
From: Representative Steven R. Malagari
To: All House members
Subject: Designating May 17 as “World Neurofibromatosis Awareness Day”
Although over 4 million people around the world are living with Neurofibromatosis and 1 in every 2,000 births is diagnosed with Neurofibromatosis, it is still relatively unknown. This genetic disorder causes tumors on nerve tissues throughout the body that can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. Despite the prevalence of this condition, there is no cure for it and there are no approved medications available for treatment.

To improve awareness of this condition and to better educate the public about it, I plan to introduce a resolution that will designate May 17, 2024, as “World Neurofibromatosis Awareness Day” in Pennsylvania. Those diagnosed with Neurofibromatosis deserve further awareness of their condition, as well as viable medications designed to help them. 

I hope you will join me by supporting this important resolution. Recognizing this day will bring more awareness and support to the researchers and doctors actively looking for new ways to treat the disease while helping to improve recognition of the signs, symptoms, and treatment options for our loved ones facing this condition.

Introduced as HR433