With a rare disease –
medications are not a nicety –
they’re a lifeline.
Individuals living with a rare disease understand the value of medication – for most it is a matter of life and death.
For ALL it is a matter of quality and independence.
We understand.
We live it too.
People living with rare diseases are inundated by their often unwelcomed new full time job of doctor appointments, tests and treatments, medication access issues, infusions, hospital and emergency room visits and more.
Understanding the medications we use and how they impact the disease process, having access to medications and learning to advocate in the face of the unknown is life-giving.
Learn more about treatments for your disease.
Select the disease under the tab By Disease to view medications, treatments & financial assistance.
Frequently Asked Questions
Are you trying to sell us medications?
No. Our only purpose is to provide full and transparent information about medication and how to access medication so that you can more effectively advocate for your needs.
Why do you only have certain diseases listed?
There are thousands of rare diseases. We add new diseases as we receive requests. Because we do not fundraise, we seek grants and corporate donations to support the work.
What is on your website?
This site has two primary purposes. The first is to educate and inform about medication treatment options. The second is to ensure you know legislation that might impact your access to and cost of medications, treatments.
I am an organization serving people with rare disease. How do I get involved?
We chose the name Cooperative on purpose. Send us an email and let’s connect!