Today marks Rare Disease Day, which aims to raise awareness for the 300 million people around the world who live with rare diseases. Spinocerebellar ataxia, Friedreich’s Ataxia, and ARSACS are just a few of the of over 6000 rare diseases that have been identified.
The main goal of raising awareness of Rare Disease Day is to achieve equity for people living with rare diseases. By their nature, people living with rare diseases can run into a number of barriers in health care systems designed for common diseases. This includes access to diagnosis, ongoing care, and treatment. Folks can also face discrimination when attending school or at work.
Today is a call to action for people with rare diseases to have equal opportunities in work and social life, as well as access to health care and treatment.
For more information, including milestones in achieving equity, actions you can take to advocate for equity, and a list of events occurring worldwide, visit RareDiseaseDay.org.
SCAsource launched one year ago today on September 27, 2018. In that time we’ve had over 18,000 views and published over 40 articles. Now we are launching a survey about the website to make sure we are meeting our goals.
SCAsource is turning a year old! A huge thank you to all our volunteer writers, editors, and proofreaders who help make the content that gets posted every week. We couldn’t do this without them. Also a big thank you to all who read and share SCAsource content. You all are the reason we made SCAsource in the first place.
Here at SCAsource, we are so excited with how we have grown in these first twelve months, and can’t wait to see where we go from here. To get a better idea of if we are meeting our goals and how we can improve, we are launching a survey about SCAsource.
What is the SCAsource Reader Survey?
This study will look at the impact of SCAsource on its readers and their knowledge of research being conducted on spinocerebellar ataxias. For this study, you are invited to complete a brief online survey that will take about 20 minutes to complete.
Why are you doing a survey?
We want to check if SCAsource is achieving its goal of making ataxia research more accessible and understandable to readers. We will use this survey data to help improve future SCAsource content. Also, we hope by studying SCAsource, that we can provide a framework that other rare disease groups can use to launch their own websites.
Additionally, we want to use this data to show the impact SCAsource to potential sponsors and funders. We want to secure funding to cover the costs of keeping the SCAsource website online.
Are there any risks? Can I withdraw part of the way through the survey?
The risks involved in participating in this study are minimal. You do not need to answer questions that make you uncomfortable. If you decide to be part of the study, you can stop (withdraw) from the study at any point before submitting your survey responses. Once you have submitted your responses for this anonymous survey, your answers will be put into a database and will not be identifiable to you. This means that once you have submitted your survey, your responses cannot be withdrawn from the study because we will not be able to identify which responses are yours.
Where can I get more information about the SCAsource Reader Survey?
You can read the Study Letter of Information, which gives you the full details about the survey. This study has been reviewed and cleared by the Hamilton Integrated Research Ethics Board (HiREB). If you have any concerns or questions about your rights as a participant or about the way the study is being conducted, call the Office of the Chair, HiREB, at 905.521.2100 x 42013.
Today marks International Ataxia Awareness Day (IAAD), which is celebrated every year on September 25th. IAAD brings people together from around the world to raise awareness about this group of rare diseases and to raise money for continuing research efforts. For more information on how you can participate in IAAD this year, take a look at the National Ataxia Foundation’s event page.
Here at SCAsource, we are celebrating IAAD 2019 by highlighting our top ten most-read articles from this year. We hope you enjoy reading these throwbacks!
Ever wonder what clinical trial “phases” mean? Why do trials need so many phases? How does this help test how safe a new treatment is? Here’s a quick overview of how drugs get from an idea in a research lab to market.