We understand that navigating atypical hemolytic uremic syndrome (aHUS) can be challenging, and having access to reliable information and support is crucial. In addition to the valuable resources you may already be familiar with, we would like to introduce you to some other websites that can provide further information and assistance on aHUS.
The aHUS Alliance Global Action is a global network dedicated to supporting aHUS patients and raising awareness about the condition. Their website provides information about aHUS, advocacy efforts, and international collaborations in the fight against aHUS.
NORD is a trusted source for information on rare diseases, including aHUS. Their website offers a variety of resources, including educational materials, patient stories, and links to aHUS-related organizations and support groups.
Financial assistance link: https://rarediseases.org/patient-assistance-programs/ .
Global Genes is a non-profit organization focused on rare diseases. They offer resources, advocacy tools, and a community platform for rare disease patients and caregivers. While not specific to aHUS, it can be a valuable resource for connecting with the broader rare disease community.
Rare Connect is an online community where you can connect with others affected by rare diseases, including aHUS. You can share experiences, ask questions, and find support from individuals who understand what you’re going through.
aHUS Source is a newly added resource created by the Alexion Pharmaceutical Company that we recommend keeping an eye on for updates and additional information about aHUS.
TAF provides underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy.
Good Days is a national non-profit advocacy organization that provides patient assistance and financial resources for lifesaving and life-extending treatments to people in need.
The mission of the Alexion Charitable Foundation is to bring promise, hope, and belonging to people living with a rare disease and those who care for them.
ClinicalTrials.gov provides information about ongoing trials and studies relative to aHUS.
*ClinicalTrials.gov is a publicly accessible database and registry of clinical trials for a wide range of medical conditions and interventions. It is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH) in the United States. ClinicalTrials.gov provides information about ongoing and completed clinical trials, including details about the purpose of the study, the study design, eligibility criteria for participants, locations where the trial is being conducted, and contact information for researchers involved in the study. Researchers and healthcare professionals use ClinicalTrials.gov to share information about their clinical trials and recruit participants. Patients and the public can use the database to find clinical trials that may be relevant to their medical conditions or interests. It serves as a valuable resource for both the research community and individuals seeking information about clinical research studies.
We hope you find these websites helpful in your journey with aHUS. Remember that you are not alone, and there are communities and organizations dedicated to supporting you. Always consult with your healthcare provider for personalized medical advice.
If you have any questions or need further assistance, please feel free to reach out. We are here to support you.
It’s important to note that the aHUS Foundation Inc. does not endorse or have any affiliation with the websites and organizations mentioned in the list. The list is purely for informational purposes to help aHUS patients explore potential sources of financial aid and support. Patients should always exercise caution and conduct their own research when seeking assistance from external sources.