Patients & Members – NORD (National Organization for Rare Disorders)

March 2, 2021

TOPIC: Press Releases, Featured News, Patients & Members

NORD and MedicAlert Foundation Team Up to Protect and Empower the Rare Disease Community

Posted at March 3, 2021 10:17 am by Laura Mullen

Washington, DC — March 2, 2021 More than 25 million Americans living with rare diseases face many challenges, including finding information about their condition, accessing quality health care, and paying for treatments. With help from the National Organization for Rare Disorders (NORDⓇ), the rare community… Read More

Tags: NORD, patient services, National Organization for Rare Disorders, Jill Pollander, MedicAlert, MedicAlert Foundation, Josefina Jervis, MedicAlert Assistance Program

February 28, 2021

TOPIC: Featured News, Patients & Members, Rare Disease Day

Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day

Posted at February 2, 2021 07:52 am by Laura Mullen

Actor, comedian and director Bob Saget invites you to Show Your Stripes today! While largely recognized for his role as Danny Tanner on the hit sitcom “Full House,” his personal connection to the rare community is less well known. Bob lost his sister to scleroderma and has participated in… Read More

Tags: Rare Disease Day, scleroderma, Show Your Stripes, Bob Saget, Full House

February 26, 2021

TOPIC: Patients & Members, Advocacy, Patient Stories, Rare Disease Day

Jason and Nola’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:41 pm by Laura Mullen

I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect of daily life. I find myself having to be more attentive and always “on” when I am with Nola. My career had to… Read More

Tags: Rare Disease Day, distal 18q deletion, New York City Police Department, caregiver

February 26, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Valencia Bella’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:31 pm by Laura Mullen

Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs so tight that it caused extensive nerve damage and near amputation. We have been blessed enough that she… Read More

Tags: Rare Disease Day, Rare Diseases, health equity, amniotic band syndrome

February 25, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Rare Disease Day, #NORDintheNews

NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Posted at February 2, 2021 12:14 pm by Laura Mullen

The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare Disease Day, storytelling, NORD’s “Show Your Stripes” campaign, and how the organization’s patient advocacy work has continued during the pandemic.

https://www.connectingals.org/episodes/showing-our-stripes-for-rare-disease-day

#NORDintheNews

Tags: Rare Disease Day, NORD, Lou Gehrig's disease, Debbie Drell, The ALS Association, Connecting ALS, Director of Membership

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March 2, 2021

NORD and MedicAlert Foundation Team Up to Protect and Empower the Rare Disease Community

Posted at March 3, 2021 10:17 am by Laura Mullen

February 28, 2021

Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day

Posted at February 2, 2021 07:52 am by Laura Mullen

February 26, 2021

Jason and Nola’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:41 pm by Laura Mullen

February 26, 2021

Valencia Bella’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:31 pm by Laura Mullen

February 25, 2021

NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Posted at February 2, 2021 12:14 pm by Laura Mullen

Topics

Alone we are rare. Together we are strong.®