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03.00.06  Dermatologist, managing expectations

  Editor’s Note: The Patient’s Voice is the advocacy affiliate of the Patient Advocate Foundation.  We translate the individual experiences of patients who have been denied access to affordable, quality health care into national and state policy initiatives. The following article may help jumpstart a discussion about step therapy and access to affordable treatment options for pityriasis

03.00.03  PRP & Treatment EDITOR’S NOTE The PRP Alliance’s MISSION STATEMENT has three separate “objectives”: (1) To improve the diagnosis of PRP; (2) To identify options for the successful treatment of PRP symptoms; and (3) To promote meaningful research on PRP. The following article focuses on the second mission: To identify options for the successful

Editor’s Note: a patient referral to PRP support group If 27 adults and the parents of children diagnosed with juvenile onset were assembled in a room and asked if their dermatologist told them how to access a PRP patient advocacy organization, only three would raise their hands.   The fact is, 27 fellow PRPers assembled in a

03.00.02  Tips for Finding Financial Aid — GARD https://rarediseases.info.nih.gov/guides/pages/149/tips-for-finding-financial-aid The cost of care for rare medical conditions can place a significant financial burden on families. The following resources may help you find the financial support you need. Does the National Institutes of Health (NIH) provide financial assistance? The NIH is the nation’s medical research agency.

From the Editor… The challenges we face while being treated for PRP As PRP patients and caregivers, we play an important role in the treatment of PRP. Collectively, the PRP community has a wealth of information from the patient perspective. No one asks what we know. During the period February-May 2015, 28 members of the

Editor’s Note: There have been situations in the past where a PRP patient has needed financial help to access a PRP-savvy dermatologist. This will become less of an issue as we reach out to teaching hospitals and identify PRP-savvy dermatology departments. The Genetic and Rare Disease Information Center offers some additional options in the following tutorial. People

Editor’s Note: During the past four years I have followed links posted to the PRP Facebook Support Group to evaluate products that might help deal with the burden of pityriasis rubra pilaris. The Genetic and Rare Diseases Information Center has published a number of tutorials that should be required reading for PRP patients and caregivers. “Finding and