Introduction
PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. If you are a newly diagnosed patient or researching MPNs, make PV Reporter your starting point. While many existing MPN websites provide excellent content, they tend to be internally focused or lack external search capabilities. PV Reporter solves that problem with MPN Search, a “custom search engine” retrieving exactly the information you are looking for!
In the Spotlight – Top Articles and Pages
Bone & Joint Pain in MPN Patients Revealed
MPN Search
The MPN Search page retrieves pertinent information from “trusted sources”, while leaving behind the mountains of disconnected data that a standard google search brings back.
MPN Search is a “custom search engine” that indexes research data, reports, stories, and news items from some of the best reference sources in the MPN World.
Sources include highly respected sites such as MPNforum, Blood Journal, MPN Research Foundation, Mayo Clinic and more. If you want to research information on PV, interferon, phlebotomy, Dr. Silver, Essential Thrombocythemia (ET), Myelofibrosis (MF) or whatever, just click on MPN Search, type it into the search box and you will immediately be served the information you are seeking. Perhaps, the most comprehensive research tool on the web related to Polycythemia Vera, MPNs, ET, and MF, pulling aggregate data from “trusted authority sites”.
MPN Resources
Numerous MPN Resources can be found here. Concise listings with one click, easy access. A growing list with helpful research tools, support groups and information for all MPN patients. This page offers a broad selection of resources to continue your research.
- Polycythemia Vera Resources
- Co-pay and Medication Assistance, MPN Websites, Airfare, Federal U.S. Benefits (provided by MPN Cancer Connection, our non profit division)
- MPN Patient Conferences and Presentations
- Additional MPN Resources
- Facebook Groups – first hand “shared knowledge” and patient support (request to join)
Blog Page (over 80 articles)
The Blog Page provides relevant news items, research reports, “‘patient stories”, presentations, clinical trials and delivers information that will be useful to you, the patient or caregiver. It has been enhanced to include:
- Featured image (main picture from article)
- Full width page for content preview
- Numbered pages for better navigation
- Improved readability
MPN News Feed
The MPN News feed provides regular, automated updates on the latest happenings in the MPN World. Fresh content served with a brief summary, date and news source. Check it out on a regular basis. Please be patient as this page draws information from numerous sources.
Patient Stories
Our fellow MPN Patients share their trials and tribulations with Polycythemia Vera, Myelofibrosis and Essential Thrombocythemia. One of the common themes among patient stories featured is patients must learn about their illness, stay informed and advocate for the best treatment available by seeing an MPN Specialist.
MPN Videos – 2018
MPN Patient Videos – Taralee tells us about Living with PV (new for 2019!)
Taralee is a stay at home mom with a chronic blood cancer (PV). She is trying to make lemonade out of lemons and hoping to share personal experiences and tips that have helped her along the way. Please be sure to consult your physician for medical advice, as this is one patient’s point of view. That being said, I hope you enjoy her videos, as she provides a down to earth view of living with PV.
- MPN Horizons is a Global conference for MPN Patient Advocates. I attended the inaugural meeting in 2016 and 2017 in Frankfurt, Germany. Delegates attended from Australia, Belgium, Canada, Denmark, Germany, Israel, Italy, the Netherlands, Spain, the UK and the USA, just to name a few.
- Here are the “Highly Informative” slides and videos from the 2017 conference.
E-Patients
MPN Patients can become empowered patients or E-Patients by embracing online patient communities, state of the art research tools and shared experiences. Armed with the proper information, you can go from a patient intimidated by your doctor to someone who demands to be a partner in medical decision making. Do you research, the more you learn about your illness and appropriate treatment options, the better armed you will be in advocating for better care. Know what questions to ask your physician.
Philosophy for Patient Care – Educating the patient is essential, so the patient can guide the physician to meet his or her needs.
ALWAYS get copies of your CBC (blood panel), tests, lab results and records for your
files at home. Don’t be shy, this is your information and it is crucial for you to learn and understand the test results so you can be properly prepared for future appointments.
Site Goals & Notes
- Make PV Reporter the starting point for your research.
- Social – click the “sharing is caring” buttons at the bottom of each page and help us spread MPN Awareness.
- Well Informed Patients are empowered to make better healthcare decisions.
- Want to share your story? – Drop us a note.
Growing Numbers of Patients
As the following infographic provided by MPN Research Foundation shows the MPN patient population is growing. Not that anyone wants to be a “member of the group”, but if you are, the positive takeaway is that MPNs are becoming more visible in the medical community and new drug trials are in the pipeline. Click here for the infographic – MPN by the Numbers.
As a result of the growing number of patients, it is my belief that comprehensive resources like PV Reporter are needed to help MPN patients research and better understand their own Myeloproliferative Neoplasm (PV, ET, MF).
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