Tag Archives: rare disease

As a NORD IAMRARE™ Registry Partner, the IPPF is proud to share that a new book, “The Power of Patients: Informing Our Understanding of Rare Diseases” was published today by the National Organization for Rare Disorders, Inc. (NORD) and Trio Health.

For pemphigus and pemphigoid patients, there are several events that can trigger stress and exacerbate disease activity, even simply being diagnosed with a rare disease. The time it takes to be diagnosed, the medication itself, and how it all affects our families and friends can trigger stress and depression.

Although there has been a huge public outcry over the cost of prescription drugs, there has been little public discussion about the need for innovation for patients who don’t yet have an effective therapy. It is estimated that 1 in 10 Americans suffer from a rare disease, and only 5% of rare diseases have a treatment approved by the Food and Drug Administration (FDA).

In November 2014, I used the chemotherapy drug Rituxan off-label for my rare disease, Immune Thrombocytopenia (ITP). The decision was made after careful consideration of all the possible outcomes. I was desperate for relief since ITP causes internal bleeding that can be fatal. This thought stayed in the back of my mind as I watched my platelets drop and my bleeding episodes increase in severity.

The IPPF strives to do many things for the pemphigus and pemphigoid community, but our three biggest goals are to raise awareness, create a support network, and to increase education. One of the biggest tools that we have at our disposal to accomplish those goals is social media.