But along the way, they are also a resource for patients, families, and caregivers affected by the disease.
Because until a cure comes, patients need support and ways to cope with Alpha-1.
The organization was founded by three individuals who all suffer from the disease. Since 1995, they’ve been advocating, funding, and supporting research for Alpha-1. On their website, they provide a variety of resources for patients—some of which include:
- A section specifically for those recently diagnosed with the illness
- Learning the basics of Alpha-1
- How to live with Alpha-1
- Resources that may be helpful
- Information on support groups
- Educational resources
- Information for healthcare providers
- About Alpha-1
- Diagnosing Alpha-1
- The latest research on Alpha-1
- Grant opportunities
- Upcoming fundraisers and events
- Ways to be an Alpha-1 advocate
- The latest news on Alpha-1
- Information on testing for Alpha-1
The website is a wealth of knowledge, all conveniently in one place. Life post-diagnosis is difficult for a myriad of factors, but the first obstacle most patients face is where to turn for more information about their illness. It’s easy to feel vulnerable, uninformed, and alone.
The Alpha-1 Foundation strives to eliminate that added stress for patients.
Now, instead of having to access numerous websites to find the information you need, just click here for practically any Alpha-1 Antitrypsin Deficiency resource you could ask for.