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Our Story
New England XP, Inc. has been operating as an incorporated 501c3 non-profit entity registered in the Commonwealth of Massachusetts since 2019 and had formerly worked as an unincorporated non-profit association for two years prior. We have embarked on our mission to provide services to sufferers of Xeroderma Pigmentosum with fervor. Our first two years represented a trial period to ensure that our services have an audience of patients and supporters. New England XP, Inc. believes that our dedication and commitment to our families is the way to forge into the future with hope. Daniela Mercedes, the Founder and President of NEXP, and her director's team have assisted some families with this rare condition in traveling to the United States to receive valuable healthcare services and treatments that have helped improve their quality of life and extend their lives. Thanks to the collaboration of Dr. Shawn Demehri and an interdisciplinary team from Massachusetts General Hospital (MGH), Massachusetts Eye and Ear (MEE), and the National Institutes of Health (NIH), we have been able to impact the lives of patients positively.
Who are we?
New England XP, Inc. is a Non-Profit entity 501c3 with Non-Profit Organization Recognition from the IRS, effective October 2019. Established in the New England Area with headquarters in the city of Lawrence, MA. Daniela Mercedes founded NEXP to help improve the quality of life of families afflicted with a potentially fatal illness called Xeroderma Pigmentosum. The organization will formally offer a variety of services. These services are designed to address the lack of resources and treatments for patients who are afflicted by this rare condition.
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Who we serve
The entity serves XP families from Latin America, including South American and Caribbean countries, with support services to help educate, protect, and combat Xeroderma Pigmentosum. Although our primary service beneficiaries are from Latin America and previously referred countries, we are open to assisting families from other areas of the globe should the opportunity arise.
What we provide
We provide personal protective equipment and education on how to protect oneself from sun exposure outdoors and indoors. Moreover, we serve as a liaison between the medical establishment in the XP families native country and the United States. Additionally, New England XP Inc. assists its clients with numerous services that help to facilitate the XP families travel and stay in the United States for the purpose of receiving urgently needed healthcare treatments and surgeries. It attains sponsorship families and hosts families in order to facilitate and secure residences for our XP families to reside in during their travel and treatment while away from home. New England XP, Inc. does not restrict itself to simply helping those afflicted by XP. We are open to helping and providing services to patients suffering from other rare genetic illnesses at our discretion.
Donate to
New England XP
and Help to Fight
Xeroderma Pigmentosum!
Donations to support Xeroderma Pigmentosum (XP) research and care are greatly appreciated. XP is a rare genetic disorder that affects the skin and eyes, making them highly sensitive to ultraviolet radiation and leading to an increased risk of skin cancer. By donating, you can help fund research to find treatments and cures for XP. You can also support the development of resources to help individuals and families who are affected by XP. Your donation will make a difference in the fight against this rare and debilitating disorder. Thank you for your generous support.
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