There are many organizations that provide education and support for severely ill populations. The following is a listing of organizations that might be of help to physicians, patients, and their family members:
* These websites are provided by Lundbeck Inc. as additional information for patients, their families and their healthcare providers. The web pages and their content are maintained by the organizations listed above. With the exception of its own websites, Lundbeck Inc. does not endorse any particular organization or the content contained on their website.
In their words
“To be perfectly frank about drug companies that manufacture drugs for rare diseases, we need them more than they need us.†- Desiree Lyon Howe Executive Director, American Porphyria Foundation (APF)