Advocacy
Awareness
Education
Research
PKDF Director of Government Affairs recaps an eventful Rare Disease Week
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:...
Transplant recipient celebrating “the sweetest gift of all” this National Donor Day
We're spreading double the love today for National Donor Day! In the US alone, more than 120,000 people are waiting for a life-saving organ donation. We recently reached out to New England Chapter Co-Coordinator Judy Ehrlich to share how her donor has impacted her...
Successful second Annual PKD Comedy Night brings in major funds and laughs
Just last month, on Nov. 13, the PKD Foundation sponsored its second Annual PKD Comedy Night at Carolines on Broadway in New York City and raised a grand total of $121,159.88! Carolines on Broadway, located in the heart of Times Square, is New York City’s premier...
Join the PKD Foundation for #GivingTuesday
#GivingTuesday is right around the corner, and this year, we're asking: what can you give? Can you give a donation? Our goal for #GivingTuedsay is to raise $18,000 — the amount needed to fund ten weeks of PKD research. When you select the PKD Foundation as your...
Father of a PKD patient celebrates Father’s Day by sharing his family’s story
Hello, and Happy Father’s Day to all the dads! My name is Ed McVey and my daughter Meredith has PKD. When I was asked to tell our story for this blog post, I realized how important it is to talk about the disease and raise awareness. My daughter was diagnosed with...
Polycystic liver disease patient shares experience with her disease
Polycystic liver disease (PLD) often goes hand in hand with PKD. We recently reached out to PKD community member and advocate Jenn Tompkins to share her experience as a PLD patient, how she has connected with others, and little-known facts about the disease: PKD...
-
This past week, 450 rare disease advocates and patients descended on Washington, D.C., for Rare Disease Week, and I wasRead More -
We’re spreading double the love today for National Donor Day! In the US alone, more than 120,000 people are waitingRead More -
Just last month, on Nov. 13, the PKD Foundation sponsored its second Annual PKD Comedy Night at Carolines on BroadwayRead More
-
#GivingTuesday is right around the corner, and this year, we’re asking: what can you give? Can you give a donation?Read More -
Hello, and Happy Father’s Day to all the dads! My name is Ed McVey and my daughter Meredith has PKD.Read More -
Polycystic liver disease (PLD) often goes hand in hand with PKD. We recently reached out to PKD community member andRead More
