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December 7, 2015

TOPIC: Sticky Posts for Patients and Families, Get Involved, Featured News, Sticky Posts for Patient Organizations

Pachyonychia Congenita Project

Posted at December 12, 2015 03:53 pm by Lisa Sencen
  1. What does it mean to you personally to be a patient organization serving the rare community? It is all about love. With a disease as rare as Pachyonychia Congenita, patients feel alone and often scared. Others around them do not understand the pain that they are dealing with while trying to live a normal life.  We are glad that… Read More

December 4, 2015

TOPIC: Featured News, Get Involved

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Posted at December 12, 2015 04:07 pm by Lisa Sencen

When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.  

NORD’s RareCareSM Patient Services – Assistance and Access Programs

For the past 28 years, NORD has offered patient assistance programs for medication access.  Every day, the RareCareSM Patient Services team… Read More

December 2, 2015

TOPIC: Medical, Patients & Members, Research, Industry, Get Involved, Featured News

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Posted at December 12, 2015 02:43 pm by Mary Dunkle

Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related careers.

Today’s healthcare professionals are aware that… Read More

November 9, 2015

TOPIC: Featured News, Patient Stories, Get Involved

Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Posted at November 11, 2015 02:21 pm by Jennifer Huron

Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 weeks, almost to full term, which can be harder with twins.

Caden & Jenna born 01-10-08 Jenna and her… Read More

October 22, 2015

TOPIC: Featured News, Advocacy, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Advocate, Get Involved

NORD Releases First-Ever State Progress Report for Rare Diseases

Posted at October 10, 2015 03:00 pm by Jennifer Huron

Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network

With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how states are serving the 30 million Americans with rare… Read More