Living with Pompe disease—or caring for someone who does—can feel overwhelming. But staying informed can be a powerful way to take control, build confidence, and communicate more effectively with your care team.
Why Staying Informed Matters
Understanding the latest research, treatments, and clinical trials can have a direct impact on your care. As Pompe disease is rare, advancements in treatment don’t always make headlines. That’s why it is so important to actively seek out credible sources of information. Staying informed means you are better equipped to make decisions about your health and have meaningful conversations with your healthcare team.
CAP is committed to helping you stay up to date. We do our best to provide regular updates on treatments, clinical trials, and research through our website, annual workshops, and social media platforms. These updates are tailored to help you navigate Pompe disease with greater clarity and confidence. However, we are far from the only resource at your disposal.
The Internet and Social Media: A Gateway to Global Knowledge
One of the most remarkable benefits of the internet and social media is how it connects us to the world. For Canadians living with Pompe disease, this means you are not limited to Canadian updates—you can access the latest international developments as well.
Why is this so important? Advances in Pompe research or new treatments approved in other countries often lay the groundwork for what could become available in Canada. By staying informed about these developments, you can start conversations with your healthcare team about upcoming possibilities or even explore options for clinical trials abroad.
CAP, as well as international groups like the International Pompe Association, Acid Maltase Deficiency Association (U.S.-based), and New Zealand Pompe Network, provide global updates across multiple social media channels, ensuring patients are in the loop about breakthroughs and opportunities. Following these groups, as well as CAP, on platforms like Facebook, Instagram, LinkedIn, X (formally Twitter), and YouTube can help you find this information and stay connected to the global Pompe community.
The Importance of Fact-Checking
While the internet is a powerful tool, not all sources are reliable. Misinformation can lead to confusion, false hope, or even harmful decisions. That’s why fact-checking is so important when staying informed.
Here are a few tips to ensure the information you’re reading is trustworthy:
- Check for Peer-Reviewed Research: Research published in peer-reviewed journals has been evaluated by experts and is more likely to be accurate. Websites like PubMed and ScienceDirect are great places to find peer-reviewed journals and articles.
- Cross-Check Information: If you come across something new, try to find it mentioned by multiple reputable sources. Consistency across credible outlets is a good sign the information is accurate. For example, if you see a headline through social media about a new drug for Pompe disease, but you cannot find a trial on ClinicalTrials.gov nor any research from a peer-reviewed journal, the social media post is likely inaccurate. Cross-checking information regarding your health is critical as misinformation in this area can be particularly dangerous.
- Beware of Red Flags: Be cautious of sensational headlines, overly optimistic claims, and articles that do not back up their information with evidence. Reliable sources typically present balanced information and back up any claims with data.
- When in Doubt, Check for CRAAP: In 2004, librarian, Sarah Blakeslee, developed a test for reliable sources called the CRAAP test. For a resource to be considered reliable through this test, individuals must consider the following: Currency (e.g., when was this information published?); Relevance (e.g., is this information helpful to you?); Authority (e.g., is the author an expert on the topic?); Accuracy (e.g., is this information supported by scientific data?); and Purpose (e.g., what biases might the authors have?). While this test was intended for researchers, everyone can benefit from thinking critically about information on the internet, and the CRAAP test is an excellent tool for this.
Checking Reputable Sources for Research Updates
Checking reputable sources for updates on treatments, clinical trials, and general healthcare is crucial. The following are great places to start:
- Canadian Health Network
- Canadian Institute for Health Information
- Canadian Organization for Rare Disorders
- Clinical Trials.gov *
- PubMed *
- ScienceDirect *
- Google Scholar *
Tip: Through these * sites, you can set up alerts to notify you when new Pompe studies are recruiting patients or new data on Pompe disease is published.
For even more resources, visit CAP’s Links and Connections pages on our website.
Leveraging Social Media
Social media is more than just a source of information—it can be a lifeline to others who understand what you’re going through and have found ways to improve their lives with Pompe disease. Through online communities, such as Facebook groups or Reddit forums, you can connect with patients and caregivers across Canada and beyond to share experiences, advice, and encouragement. Whether it’s practical tips for daily life or insights into navigating healthcare systems, these connections remind you that you’re never alone.
Here are some pages that may be helpful:
- Pompe disease patient organizations:
- Online patient groups:
- Other patient organizations:
At CAP, we’re here to ensure you have the tools and resources you need to stay informed and connected, no matter where you are in your journey. If you have any additional suggestions for ways we can help, including any tips or pages we did not mention, feel free to contact us at cap@pompecanada.com.