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May 24, 2022

TOPIC: RDACs, Uncategorized, Press Releases, Featured News, Advocacy

Connecticut Establishes a Permanent Rare Disease Advisory Council

Posted at May 5, 2022 04:07 pm by Valaree DonFrancesco

May 24, Hartford, CT – Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the state of Connecticut. Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019, but the Rare Disease Advisory Council created as part of HB… Read More

January 25, 2021

TOPIC: Uncategorized

NORD’s Rare Caregiver Respite Program Featured in BioNews Service Newsletters

Posted at January 1, 2021 11:40 am by Valaree DonFrancesco

On January 22, NORD’s Rare Caregiver Respite Program was featured in an article by BioNews Service writer Mary Chapman detailing the program’s offerings. It has run in the following patient-focused newsletters to date:

  • Pulmonary Fibrosis News (reach: 90k readers)
  • Cystic Fibrosis News (reach: 50k readers)
  • Cushing’s Disease News (reach: 13k readers)

The article can be read in its entirety Read More

October 23, 2020

TOPIC: Uncategorized

Head of the Herd: Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

Posted at October 10, 2020 08:33 am by Valaree DonFrancesco

At the Head of the Herd is… Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

Lanie advocates for those affected by… familial dysautonomia (FD)

Lanie is located in… New York, NY

How Lanie got here… I first heard of this rare disorder when a friend’s son was born with it 14 years ago. I was merely a donor to the Foundation until I… Read More

July 14, 2020

TOPIC: Uncategorized

Rare Action Network’s Maria Bellefeuille Interviewed by Patient Empowerment Network Leading up to Living Rare Forum

Posted at July 7, 2020 02:46 pm by Valaree DonFrancesco

Patient Empowerment Network recently interviewed Rare Action Network Volunteer State Ambassador for Illinois Maria Bellefeuille on being both a rare disease patient and advocate. Maria will be speaking at this weekend’s Living Rare, Living Stronger NORD Patient and Family Forum on the “Long-term Survivor Panel: Tips, Tricks & Life Hacks for Living Your Best, Rare Life!” panel, which… Read More