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ROCKVILLE, MD / ACCESSWIRE / February 23, 2021 / Because the nation prepares to watch Uncommon Illness Day on Feb. 28, the American Kidney Fund (AKF) at the moment introduced a brand new consciousness and schooling marketing campaign centered on primary hyperoxaluria (PH), a uncommon dysfunction that may trigger recurrent kidney stones and infrequently leads to kidney failure. The marketing campaign will improve understanding and consciousness of PH sorts 1, 2, and three, with a specific give attention to PH1, probably the most prevalent and extreme of the three sorts. AKF developed the marketing campaign with assist from Alnylam Prescription drugs Inc. and developed the marketing campaign content material in partnership with the nonprofit Oxalosis & Hyperoxaluria Basis (OHF).
PH is a uncommon genetic illness that originates within the liver and causes a waste product known as oxalate to construct up within the physique. This buildup impacts a number of organs, particularly the kidneys, the place sufferers expertise persistent kidney stones. Over time, these recurrent kidney stones and the injury induced to the kidneys by calcium oxalate crystals can result in kidney failure and, finally, multiorgan dysfunction. As many as 1 in 58,000 people worldwide are affected by PH, with PH1 accounting for roughly 80% of circumstances. Folks of any age can develop PH, and kids who develop kidney stones ought to be evaluated for the dysfunction. As soon as the illness has progressed to kidney failure, sufferers require ongoing dialysis therapy to outlive. If sufferers have a transplant, they have to bear a mixed liver/kidney transplantation to appropriate the defect within the liver in order that the transplanted kidneys can perform with out injury.
“Folks residing with major hyperoxaluria want entry to credible info and assets concerning the illness, and people who find themselves undiagnosed however affected by signs must be conscious that they might be in danger,” stated LaVarne A. Burton, AKF president, and CEO. “We’re grateful to Alnylam and the Oxalosis & Hyperoxaluria Basis for his or her assist in serving to us to broaden our academic assets on this important subject and to offer folks with PH the instruments they should encourage their relations to get examined for PH earlier than kidney injury happens.”
“The OHF is devoted to creating certain that nobody is missed in analysis, therapy, and look after PH. We’re enthusiastic about these new assets, which can assist give these residing with the illness the chance to study extra,” stated Kim Hollander, OHF govt director. “We’re extremely excited to accomplice with AKF to assist broaden consciousness and outreach for PH.”
AKF’s PH marketing campaign will present academic info on PH, in addition to assets to foster conversations between already-diagnosed sufferers and their households concerning the heritable nature of the illness, with the purpose of encouraging genetic testing. Among the many new academic assets from AKF are a brand new PH webpage, a patient-family dialogue information, and a downloadable infographic that explains PH, its signs, and methods to handle the illness to sluggish the development of kidney injury. Assets will be discovered at KidneyFund.org/ph or on OHF’s website.
About Us
The American Kidney Fund (AKF) fights kidney illness on all fronts because the nation’s main kidney nonprofit. AKF works on behalf of the 37 million People residing with kidney illness and the thousands and thousands extra in danger, with an unmatched scope of applications that assist folks wherever they’re of their combat in opposition to kidney disease-from prevention by means of transplant. With applications that deal with early detection, illness administration, monetary help, scientific analysis, innovation, and advocacy, no kidney group impacts extra lives than AKF. AKF is among the nation’s top-rated nonprofits, investing 97 cents of each donated greenback in applications, and holds the very best 4-Star score from Charity Navigator and the Platinum Seal of Transparency from GuideStar.
For extra info, please go to KidneyFund.org, or join with us on Facebook, Twitter, and Instagram.
Contacts
SOURCE: American Kidney Fund
View supply model on accesswire.com:
https://www.accesswire.com/631186/American-Kidney-Fund-Expands-Rare-Disease-Resources-with-New-Primary-Hyperoxaluria-Campaign
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