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February 14, 2020

TOPIC: Advocacy, Featured News, Patients & Members

Head of the Herd: Bonnie Royster, CdLS Foundation

Posted at February 2, 2020 09:05 am by Laura Mullen

At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation

Bonnie most frequently checks her… Facebook 

Bonnie advocates for those living with… Cornelia de Lange syndrome, or “CdLS”

Bonnie is located in… Avon, CT

How Bonnie got here…

I have a corporate background… Read More

January 31, 2020

TOPIC: Advocacy, Featured News, Patients & Members

Head of the Herd: Mike Morris, TANGO2 Research Foundation

Posted at January 1, 2020 08:32 am by Laura Mullen

At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation

Get in touch with Mike on… Facebook and Twitter

Mike advocates for those living with… TANGO2 disorder

Mike is located in… Middletown, CT

How Mike got here… 

My son Ryan was diagnosed with TANGO2 disorder in… Read More

January 30, 2020

TOPIC: Advocacy, Featured News, Press Releases

NORD State of the States Report Shows Key Policy Improvements Were Achieved by States in 2019, But More Progress Is Needed to Support Americans Living with Rare Diseases

Posted at January 1, 2020 02:16 pm by Laura Mullen

Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™), while many US states took powerful steps forward in 2019, there is major work yet to be done on a number of policy issues critical to over… Read More

January 27, 2020

TOPIC: Advocacy, Featured News, Get Involved

Students for Rare Featured Student: Allison Herrity

Posted at January 1, 2020 09:55 am by Laura Mullen
  • Tell us a little bit about yourself! Where are you from? 

I’m Allison Herrity and I’m from Arlington, Virginia! 

  • Where do you attend school and what are you studying?

I’m a senior at the George Washington University studying public health. I’ll also be staying at GW for an extra year after I graduate to complete an… Read More

January 17, 2020

TOPIC: Advocacy, Featured News, Patients & Members

Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Posted at January 1, 2020 08:35 am by Laura Mullen

At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation 

Leah advocates for those living with… SCN2A Disorders 

Leah is located in… Gettysburg, PA 

How Leah got here… 

My son had his first seizure a few days after his first birthday. Our… Read More