03.00.03 A treatment Plan is more than drugs It’s time to refer PRP Patients to the PRP Alliance By Bill McCue, Patient Advocate My iPhone rang. It was a life-altering moment when my dermatologist’s office called to confirm my diagnosis: pityriasis rubra pilaris. It was November 28, 2012. At first there was a feeling of […]
A Treatment Plan is more than drugs Read More »
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.
Finding Financial Aid — GARD Read More »
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
The challenges we face while being treated for PRP Read More »
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
Help with Travel Costs Read More »
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 Evaluating Online Resources Read More »
03.09.00 Preserving Patient Access to Treatments EDITOR’S NOTE: Since 2013, the AADA has been a member of the Coalition for Accessible Treatments (CAT), whose key priority is to advocate for enactment of H.R. 1600, the “Patients’ Access to Treatments Act” (PATA) sponsored by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA). As a member
Preserving Patient Access to Treatments Read More »
03.08.00 What constitutes an emergency or urgent care situation and what are the most usual treatments?
What constitutes an emergency or urgent care situation? Read More »
Editor’s Note: The following article appeared in Medical Economics in January 2009. Medical Economics did not specifically evaluate these Centers of Excellence for their PRP savviness. Quality medical care can be found in every specialty and in every corner of the country, in hospitals and free clinics, in solo practices, and in sprawling medical centers.
What are Centers of Excellence? Read More »
03.06.04 What Things Should I Know When Selecting a Complementary Health Practitioner – GARD If you’re looking for a complementary health practitioner to help treat a medical problem, it is important to be as careful and thorough in your search as you are when looking for conventional care. Here are some tips to help you
What Things Should I Know When Selecting a Complementary Health Practitioner? Read More »
03.06.03 What are the issues related to a Complementary Health Approach? – GARD https://nccih.nih.gov/health/decisions/consideringcam.htm Millions of Americans use complementary health approaches. Like any decision concerning your health, decisions about whether to use complementary approaches are important. The National Center for Complementary and Integrative Health (NCCIH) has developed a fact sheet to assist you in your
What are the issues related to a Complementary Health Approach? Read More »