Rare Disease Day – 2016

Rare Disease Day 2016



February 29, 2016 marks the 9th annual international Rare Disease Day. On this day every year, organizations around the globe unite their efforts to help bring awareness to the many rare illnesses that do not often see the spotlight. The international rare disease community asks that you recognize this day and Join us in making the voice of rare diseases heard.

The collective organizations releasing this statement wish to bring awareness to pseudomyxoma peritonei, also known simply as PMP, and cancer of the appendix (which often causes PMP). This rare disease impacts approximately two in a million people every year. As patients, caregivers and clinicians impacted by this disease, it is our hope to bring awareness to this disease and its proper treatment.

Twenty years ago, PMP was almost uniformly fatal. Today, treatment exists that is potentially curative and is practiced by centers of excellence around the globe. Even though a treatment exists that cures many, it is not broadly practiced and local physicians and their patients routinely proceed through ill-advised and insufficient treatments for lack of knowledge.

The standard of care for PMP is cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS+HIPEC). This procedure, at times coupled with intravenous chemotherapy, has been successful at curing many patients. It’s important to understand that the skill and experience of both the surgeon and the treatment center are important factors that influence a successful outcome. Although the procedure is quite invasive, when performed by a specialist the associated morbidity and mortality are no greater than for similar surgeries.

CRS+HIPEC has been shown to provide long term survival in up to 90% of patients with low-grade PMP pathology who are properly diagnosed and undergo the treatment early enough in the disease process. Additionally, it has demonstrated an overall 10-year survival in nearly 2/3 of patients diagnosed with this disease.

A number of patient-run organizations work together to raise awareness about PMP and its proper treatment, raise funds for research and disburse them responsibly, and to provide information, support and hope to patients, caregivers and the clinicians that fight this disease. We do so with a positive attitude while being realistic about the challenges around its treatment. In this manner we support our small community and help ensure all patients have access to the standard of care for our rare disease.
We hope you’ll join us on Rare Disease Day in raising awareness of pseudomyxoma peritonei and appendix cancer. Please share this message and join us in making the voice of rare diseases heard.

Appendix Cancer Connection (Appendix-Cancer.com)
BE uninTIMidated (BEuninTIMidated.org)
The Insurance Warrior (TheInsuranceWarrior.com)
PMP Research Foundation (PMPCure.org)
PMP Pals Network (PMPPals.net)<strong

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