by Patrick Dunn, International Pemphigus and Pemphigoid Foundation
As many in the rare disease community know, one of the biggest challenges facing an organization focused on supporting patients is raising awareness. We build networks of support and information, but how do we reach people suffering through symptoms of a disease they don’t know exists? How do we ensure that medical professionals are knowledgeable about these diseases so that patients receive correct diagnoses?
For the International Pemphigus & Pemphigoid Foundation (IPPF), these questions are the basis of a new Awareness Campaign. The goal of this campaign is to reduce both the amount of time patients spend searching for a diagnosis and the number of healthcare providers patients see before receiving that diagnosis.
The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell production is so poor in the bone marrow, the body tries to compensate by moving the process over to the spleen. For Bill, the news that his spleen had already enlarged to twice its normal size was alarming, to say the least. read more >
In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had been living with this disease for at least six years prior to diagnosis. read more >
Imagine knowing something is wrong with your baby, but medical professionals cannot provide a diagnosis. Frustrated and scared, you spend every waking moment agonizing about your child’s health and quality of life; you feel helpless and alone. Nobody seems to understand, and some people even insist your child is fine and you are overreacting. Deep down, you know there is something wrong. That is what the Hoffmans experienced after the birth of their son, Ethan. read more >
We know the math:
In other words, nearly 1 in 10 of us have a rare disease. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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