Scroll
To Top

June 13, 2019

TOPIC: Patient Stories

Jenny’s ACPMP Story

Posted at June 6, 2019 08:36 pm by Christina Jensen

The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects on her life-changing experience after undergoing a clinical trial for ACPMP. A special thanks to NORD’s Member Organization, the ACPMP Foundation for sharing this story!

Read More

June 3, 2019

TOPIC: Featured News, Patient Stories, Patients & Members, Press Releases, Research, Sticky Posts for Homepage

NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES

Posted at June 6, 2019 05:33 am by Christina Jensen

Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders

Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the estimated 30 million Americans living with… Read More

May 22, 2019

TOPIC: Patient Stories, Patients & Members, Research

Arthur’s CIDP Story

Posted at May 5, 2019 10:34 am by Christina Jensen

The following story was submitted by Arthur Gause in honor of May’s Rare Spotlight, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In this story, Arthur reflects on his diagnostic journey and the importance of continued rare disease research. A special thanks to NORD’s Member Organization,
the GBS|CIDP Foundation for sharing this story during CIDP… Read More

May 21, 2019

TOPIC: Featured News, Get Involved, Patient Stories, Patients & Members

Exciting Rare Impact Awards Announcements

Posted at May 5, 2019 10:34 am by Christina Jensen

This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every registration to the Living Rare, Living Stronger NORD Patient and Family Forum, June 21-23 in Houston, TX, comes with a complimentary ticket to this terrific event. Read More

May 20, 2019

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members

Deborah Skolaski: 2019 Rare Impact Award Honoree

Posted at May 5, 2019 01:31 pm by Christina Jensen

Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, as well as behavior. Deborah felt helpless as she observed the struggles that her son, daughter-in-law and Cori were experiencing. However, she was determined to make a… Read More