Rare Disease Awareness Day is Thursday, February 29, 2024
LAS VEGAS – The Nevada Rare Disease Advisory Council is debuting the “While You Wait” campaign during rare disease awareness month, an effort to help Nevada determine the number of families affected by rare diseases and to help the State allocate the necessary resources, treatment options, and services crucial to this patient group.
Beginning this month, medical providers, urgent care clinics, and specialized medical offices across the state will receive “While You Wait” flyers containing a QR link to the survey. The flyers should be placed in exam rooms, medical front offices, waiting rooms, and other areas visible to the public.
The “While You Wait” survey, also known as a needs assessment, is the State of Nevada’s first coordinated effort to collect insights from individuals statewide who are directly affected by rare disease or have family members impacted by them.
“Right now, we don’t know how many Nevada families are affected by rare disease, so this is our first step in a path of objectives that will allow us to better serve the rare disease community,” said Annette Logan-Parker, Nevada Rare Disease Advisory Council Board Chair. “The needs assessment will also help us ensure that medical providers across the state – urban and rural – possess the knowledge and awareness required to identify rare diseases, recognize their symptoms, and provide appropriate care.”
Although the “While You Wait” campaign flyers will be distributed to medical providers across the state in early February, the public does not have to wait until a trip to the doctor to take part. The survey is also available online at https://redcap.link/nvrdac.
In the United States, roughly 7,000 rare diseases affect more than 30 million individuals. Some of these conditions are exceedingly rare, affecting just a handful of patients in a county or state. Others, however, touch the lives of hundreds or thousands of people, including many who live in Nevada.
Childhood cancer is classified as a rare disease, as are many, but not all, forms of adult cancers. Conditions such as sickle cell anemia, hemophilia, various bleeding and clotting disorders, cystic fibrosis, Duchenne muscular dystrophy, and approximately 50 lysosomal storage diseases including Pompe disease, Fabry disease, and Gaucher disease all fall under the rare disease umbrella. Generally speaking, a rare disease is one that affects fewer than 200,000 individuals.
The Nevada Rare Disease Advisory Council was created by the Nevada State Legislature during the 2019 session. In addition to determining the number of families affected by rare disease, the council will explore the consequences of delayed or inadequate treatment on patients’ quality of life and its impact on Nevada’s economy. The council will also examine treatment delivery systems of rare diseases and create recommendations aimed at extending the lifespan and improving the quality of life for rare disease patients.
