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 >
It can be disheartening for rare disease patients to consider the problem of diagnostic delay. As NORD’s recent informal survey revealed, more than half of us spend three years or more looking for diagnosis and treatment. Once we find it, it’s natural to want to put the whole problem behind us. read more >
NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis?
We were stunned at the response. Within the first few hours, we got 200 replies and 20% of those who responded had waited 10 years or longer to get an accurate diagnosis. read more >
The rare community has made huge strides in the 30 years that have elapsed since the Orphan Drug Act was passed. There are more new treatments and there is more investment in research and more awareness of rare diseases than ever before. But what about diagnosis? Are we getting better at diagnosing rare diseases? 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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