nordpod-updated header
NORD-logo people

The official podcast of The National Organization for Rare Disorders (a.k.a NORD), a 501(c)(3) patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

Episodes

July 14, 2021 - 30 MIN

Policy Matters: One Dad's Journey

iosspotify
On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcomed into the club no one asks to joi.. Read More
On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcomed into the club no one asks to join when their daughter Hayden was diagnosed with an extremely rare condition known as Cystinosis. In navigating these new waters, they found NORD and the Cystinosis Research Foundation, which offered up much-needed peer support and resources. Hayden's future is bright these days, and Scott has channeled his Soccer Coach instincts with his Father's lobbying skills into becoming an outspoken patient advocate and storyteller at the legislative level. Now he is paying it forward with many others who are part of NORD's Rare Action Network. Policy is the end game because that is what unites the rare community with systemic changes that can make all of our lives better en masse. Enjoy our conversation.
Read Less
June 30, 2021 - 26 MIN

NORD's Rare Disease Advisory Councils

iosspotify
On the show today, it's all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a stronger voice in state government. Joining us is NORD Director of Policy Heidi Ross,.. Read More
On the show today, it's all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a stronger voice in state government. Joining us is NORD Director of Policy Heidi Ross, your one-stop human shop to understanding what these councils are, and how you – the listener – can take an active role in local policy changes. Long story short, RDACs can make a significant impact in your state, and you can contribute to that voice with resources from NORD's Project RDAC. NOTE: Sitting in for Matthew Zachary today is OffScrip Media Co-Founder and Chief Operating Officer Andrew MacDowell. For more information about NORD visit https://rarediseases.org.
Read Less
June 09, 2021 - 39 MIN

Fifteen Months Later...

iosspotify
Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. .. Read More
Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s impact cannot be understated. Millions of lives have been uprooted as we mourn the deaths of hundreds of thousands. But our shared pain and suffering are what make us stronger together. Lesli and Matthew also discuss the unique challenges facing the nonprofit sector and the medical profession in the wake of life being turned upside down. They acknowledge NORD’s role in confronting the crisis head-on by implementing new support programs, financial aid systems, and incubation grants to startup charities in the space.
Read Less
May 26, 2021 - 26 MIN

Rare Voices of NORD: Jo-Ann D'Angelo

iosspotify
On the show today, Matthew Zachary welcomes Jo-Ann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement th.. Read More
On the show today, Matthew Zachary welcomes Jo-Ann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There is no cure, and the only treatment is invasive plastic surgery that only impacts the appearance and doesn't address any underlying conditions. Jo-Ann is an extraordinary human being who very bravely shares her remarkable story with us today. She is currently going through the "NORD RareLaunch: Forming a Foundation" program which is helping to incubate and accelerate her nonprofit ambitions. She is a consummate example of how one person can make a difference for so many others. Enjoy the show. Follow us on social @NORDpodcast
Read Less
May 12, 2021 - 30 MIN

Jeff Goldstein and NORD's RareLaunch Research Ready

iosspotify
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for l.. Read More
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis — lots of syllables with a very bleak outlook. Eighteen years later, he's still here to talk about not just his incredible story but the extraordinary partnership he's struck with NORD's RareLaunch Research Ready program to kick off their first patient registry for this truly under-voiced community. Follow us on social @NORDpodcast
Read Less

Hosted By:

Matthew Zachary