by Sydney Johnston | Oct 15, 2022 | ARPKD, Caregivers, Family Life
Published on October 15, 2022 | Today is Pregnancy and Infant Loss Remembrance Day. Every October 15, we honor we honor lost pregnancies and infant deaths which includes miscarriages, still births, and of course, ARPKD. A rare genetic disorder, autosomal recessive...
by Sydney Johnston | Oct 11, 2022 | Uncategorized
Published October 11, 2022 | Every year, PKD Awareness Day is celebrated through special ceremonies and activities to educate others about PKD and advocate for the PKD Community. With a recent resolution passing in the Senate, this day is now officially designated as...
by Sydney Johnston | Sep 27, 2022 | Uncategorized
Published on September 27, 2022 | The heat is fading and fall activities are popping up. Whether it’s for a football game, movie night, or fall potluck, we can all use another PKD-friendly snack option. This recipe for a seven-layer dip from our cookbook,...
by Sydney Johnston | Sep 22, 2022 | Uncategorized
Published on September 20, 2022 | Last year, the Critical Path Institute’s Polycystic Kidney Disease Outcomes Consortium (PKDOC), the PKD Foundation, and Otsuka hosted the 2021 PKD Regulatory Summit. In addition, key stakeholders from the pharmaceutical industry and...
by Sydney Johnston | Sep 13, 2022 | ARPKD
Published on September 13, 2022 | At the age of 5, Ian Jones (name changed for privacy) was diagnosed with ARPKD. During a routine trip to his pediatrician, his mother mentioned that Ian was having a lot of trouble staying dry at night. Tests revealed that he...
