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December 3, 2021

TOPIC: Patients & Members, Patient Stories

Dianna’s Story as a Rare Survivor

Posted at December 12, 2021 09:00 am by Rohan Narayanan

Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals in university and Fortune corporations, as well as offering my expertise in state, federal and international consulting. 

Further aspirations ended when I was diagnosed with stage IV Leiomyosarcoma (LMS) pelvic bone cancer and given 3-6 months to live. I am just beginning to cope and on the road of… Read More

November 26, 2021

TOPIC: Patients & Members

NORD Gives Back: Caregivers and Families

Posted at November 11, 2021 09:00 am by Rohan Narayanan

As we reach the holiday season, let us take time to celebrate and lift up the rare disease community. For this season of giving thanks, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging plenaries to breakout sessions to speakers from… Read More

November 24, 2021

TOPIC: Patients & Members

NORD Gives Back: Advanced and Advancing Care

Posted at November 11, 2021 09:00 am by Rohan Narayanan

As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community.  For this season of giving, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging… Read More

November 22, 2021

TOPIC: Patients & Members

NORD Gives Back: Benefits for the Newly Diagnosed

Posted at November 11, 2021 09:00 am by Rohan Narayanan

As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community.  For this season of giving thanks, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum…. Read More

October 29, 2021

TOPIC: Patients & Members, Patient Stories

Five Disorders: Dee’s Rare Story

Posted at October 10, 2021 09:00 am by Rohan Narayanan

I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009. 

Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries later, I go on. The chronic EBV destroys my immune system, so… Read More