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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: Featured News, Patients & Members

The Platelet Disorder Support Association (PDSA): 2019 Abbey S. Meyers Leadership Award

Posted at May 5, 2019 03:36 pm by Christina Jensen

The Platelet Disorder Support Association (PDSA) is dedicated to enhancing the lives of people with Immune Thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support. ITP is an autoimmune bleeding disorder and affects children and adults. Patients with ITP face a complex set of physical and emotional challenges as they seek to monitor their… Read More

May 20, 2019

TOPIC: Featured News

The Honorable Michael McCaul: 2019 Rare Impact Award Honoree

Posted at May 5, 2019 03:32 pm by Christina Jensen

Serving his eighth term in Texas’ 10th Congressional District, Congressman Michael McCaul has achieved significant advancements for the rare disease community. In particular, Congressman McCaul has been a strong supporter of pediatric cancer patients and their families. Over the course of his career, he has spearheaded the effort to ensure that… Read More

May 20, 2019

TOPIC: Advocacy, Featured News

The Honorable Sarah Davis: 2019 Rare Impact Award Honoree

Posted at May 5, 2019 03:28 pm by Christina Jensen

Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State Representative for Texas House District 134, located in Houston, Texas. In Representative Davis’ role as Chair of the Appropriations Subcommittee on Health and Human Services (Article II), she has… 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