AKF launches primary hyperoxaluria campaign in advance of Rare Disease Day
Adding to its resources on rare diseases, The American Kidney Fund has launched an education and awareness campaign on primary hyperoxaluria.
The announcement comes in the week preceding Rare Disease Day, which is observed annually by countries around the world on Feb. 28.
According to a press release from the organization, the campaign aims to increase understanding of primary hyperoxaluria (PH) types 1, 2 and 3, but special emphasis is placed on type 1 as it is the most common and severe. Specific components of the resource collection include a patient-family discussion guide (because the disease is heritable in nature, the release stated, the campaign encourages genetic testing) and information on disease management (particularly, ways to slow the progression of kidney damage).
The release further noted content was developed in partnership with the nonprofit Oxalosis & Hyperoxaluria Foundation (OHF), with funding for the campaign coming from Alnylam Pharmaceuticals Inc. As Healio Nephrology previously reported, the FDA approved Alnylam’s treatment for PH type 1 in November 2020; the RNA interference therapeutic is the first medication approved to treat the condition.
“The OHF is dedicated to making sure that no one is missed in diagnosis, treatment and care for PH,” Kim Hollander, executive director for the OHF, said of the partnership. “We are excited about these new resources, which will help give those living with the disease the opportunity to learn more. We are incredibly excited to partner with AKF to help expand awareness and outreach for PH.”
LaVarne A. Burton, AKF president and CEO, also commented on the campaign.
“People living with primary hyperoxaluria need access to credible information and resources about the disease, and people who are undiagnosed but suffering from symptoms need to be aware that they could be at risk,” she said. “We are grateful to Alnylam and the Oxalosis & Hyperoxaluria Foundation for their support in helping us to expand our educational resources on this vital topic and to provide people with PH the tools they need to encourage their family members to get tested for PH before kidney damage occurs.”
To explore the resources, visit: KidneyFund.org/ph.
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