by PKD Foundation Staff | Mar 15, 2019 | Research
Earlier this week, I joined over 200 people from pharma, biotech, patient advocacy, regulatory agencies and patients at Patients as Partners 2019 in Philadelphia, PA. It was great to hear about how researchers and study sponsors are working to infuse the patient voice...
by PKD Foundation Staff | Mar 14, 2019 | Transplantation, Voices of PKD
To know me is to know my family and PKD: how PKD defines my family, but does not hold us back. How PKD is in our daily thoughts, but does not hold us back. How PKD challenges us, but does not hold us back. How PKD tests our strengths, but does not hold us back. I am a...
by PKD Foundation Staff | Mar 8, 2019 | Awareness
My name is Paige Trischler, but I also go by Elisabeth Rae. I am 16 and from Pittsburgh, Penn. I was diagnosed with PKD in October 2015 and got in involved with the PKD Foundation through going to Chapter meetings. One of the amazing ladies in the Pittsburgh Chapter...
by PKD Foundation Staff | Mar 7, 2019 | ADPKD, ARPKD, Education
We’re only a couple months out from the 2019 PKD in Children Conference, and if you’re a PKD parent, this is a can’t-miss event! Join us in Chicago from May 3 to 5 for an amazing opportunity to learn essential information on how to manage your...
by PKD Foundation Staff | Mar 4, 2019 | Advocacy, Awareness, Education
This past week, 450 rare disease advocates and patients descended on Washington, D.C., for Rare Disease Week, and I was glad to be amongst them. It was a packed agenda with four days of activities and awareness opportunities and I’d like to share the highlights:...
