Rare Disease News

Tara Z’s Story in Honor of Rare Disease Day

Published February 23, 2021 by NORD

Categorized in -

I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms started after I lost my former husband to …

Continue reading “Tara Z’s Story in Honor of Rare Disease Day”

Hudson’s Story in Honor of Rare Disease Day

Published February 22, 2021 by NORD

Categorized in -

I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many …

Continue reading “Hudson’s Story in Honor of Rare Disease Day”

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Published February 22, 2021 by NORD

Categorized in -

Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. …

Continue reading “Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day”

NORD Offers Emergency Relief to Rare Disease Patients and Families Impacted by Natural Disasters

Published February 19, 2021 by NORD

Categorized in -

Sometimes a helping hand is most needed when an unexpected emergency arises. NORD is committed to supporting rare disease patients and families and offers several programs to assist them in times of crisis. NORD’s Hurricane and Natural Disaster Emergency Relief Fund provides financial …

Continue reading “NORD Offers Emergency Relief to Rare Disease Patients and Families Impacted by Natural Disasters”

NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients

Published February 17, 2021 by NORD

Categorized in -

On February 17th, NORD, along with The ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation, sent a letter to Centers for Disease Control and Prevention (CDC) Director Walensky and …

Continue reading “NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients”

NORD Launches Rare Disease Educational Support Program

Published February 9, 2021 by NORD

Categorized in -

As the saying goes, knowledge is power. It is vital that people directly impacted by the more than 7,000 rare diseases are armed with the knowledge and information they need …

Continue reading “NORD Launches Rare Disease Educational Support Program”

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

Published January 28, 2021 by NORD

Categorized in -

Washington, DC, January 28, 2021— Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe …

Continue reading “How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28”

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Published January 26, 2021 by NORD

Categorized in -

Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular …

Continue reading “NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines”

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

Published December 22, 2020 by NORD

Categorized in -

After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect patients from surprise medical …

Continue reading “The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses”

STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

Published December 17, 2020 by NORD

Categorized in -

In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE …

Continue reading “STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients”

Rare Disease News

Tara Z’s Story in Honor of Rare Disease Day

Hudson’s Story in Honor of Rare Disease Day

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

NORD Offers Emergency Relief to Rare Disease Patients and Families Impacted by Natural Disasters

NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients

NORD Launches Rare Disease Educational Support Program

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

Your Support Keeps Rare Disease Resources Free

Thank You for Being Part of The Rare Community