Atypical hemolytic uremic syndrome (aHUS) is a rare, genetic disease in which blood clots in the small blood vessels of the kidneys lead to symptoms such as fatigue, nausea, vomiting, hemolytic anemia (destruction of red blood cells), impaired kidney function, and thrombocytopenia (low platelet counts).
aHUS is often stressful, and long-term care is needed to cope with its symptoms. Moreover, the rarity of aHUS can make access to reliable information difficult and time-consuming. This is where advocacy and support groups can come in handy. Here are a few pointers on finding aHUS support groups, and what to expect from them.
Register for aHUS support resources
There are several organizations that offer patient support and information on the latest developments pertaining to aHUS. Some of these organizations are:
- The aHUS Foundation
- The aHUS Alliance
- The American Kidney Fund
- The National Kidney Foundation
- aHUS Canada
- The National Renal Complement Therapeutics Centre
It is a good idea to register on these websites so that updates related to new treatments, clinical trials, and patient stories get delivered directly to your inbox. You may also ask your doctor if there are support groups in your area that you may find useful.
Check out resources provided by pharmas
Many pharmaceutical companies offer a support group of their own for medicines they’ve developed to treat rare diseases. In the case of aHUS, Soliris (eculizumab) is the commonly recommended treatment option. Its manufacturer, Alexion Pharmaceuticals, offers a complimentary, personalized patient support program called OneSource.
If you are using Soliris, registering with OneSource can give you access to dedicated nursing case managers. According to the company, these case mangers understand the condition and who can provide personalized support regarding health insurance, disease information, and treatments. They can also direct you to community pages, and invite you to aHUS patient meet-ups.
Enroll in the aHUS Registry
Established in 2012, the global aHUS Registry (NCT01522183) is an observational and multi-national study of patients diagnosed with aHUS. By enrolling in the aHUS registry, you can help to advance aHUS research and therapy development, as well as the understanding of disease outcomes and safety data.
Patients enrolled in such registries may receive first-hand information about new developments, and have access to wider support groups both at the clinic and elsewhere.
Join patient associations on social media
Social media platforms such as Facebook and Twitter can enable patients, regardless of their location, to connect and share their experiences about the disease. There are several patient associations for aHUS on social media that can be quite helpful resources. They can also help you connect with other patients in your area.
For a list of such associations by country, check out the Patient Associations page on the aHUS Alliance website.
Keep a tab on our website
Our website, aHUS News, helps you stay up-to-date with new developments in aHUS research. Subscribing to our newsletter is an easy way to keep a tab on information so that you never miss important news, or a breakthrough. Here, you can also find tips and insights to help you better cope with the disease, and get first-hand information about upcoming clinical trials that you may be eligible for and interested in taking part.
Last updated: Jan. 6, 2020
aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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