Two invitations, an award, a report, and a research project.
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1. Red Blood Cell Patient Forum April 29
4th Annual Red Blood Cell Patient Forum
Saturday April 29, 2017
Toronto General Hospital, Astella Conference Room

This invitation has been extended to the NRBDO membership.
I (Jennifer) attended last year and found it very inspiring.
Eventbrite Page with more information and registration. 
(Please register ASAP if you intend to go.)

The themes of this forum are: Patient Empowerment, Self-advocacy, Wellness and Peer Support. Our goals are to increase patient engagement, build leadership skills and raise awareness on various topics including such as Pain Management, Mental Health, Blood Transfusion and Patients’ rights in healthcare. This event is being developed by patients with Sickle Cell Anemia, Thalassemia & other red blood cell disorders. The forum will host an array of speakers including patients, professionals and healthcare providers.  Also, a variety of entertainment and informational booth tours will be integrated in the program.
2. CORD Rarity Award
At the end of March, our Chair Whitney Goulstone was able to represent the NRBDO on a panel at the CORD Conference, discussing the value of patient group networks. 

She was also honoured to except on our behalf, the CORD Rarity Award as a CORD affiliate member that is making outstanding contribution in patient support or advocacy.

All the CORD Rarity Award winners for 2017 are listed here. Many thanks to CORD for an excellent conference, and for recognizing the NRBDO with this award!
3. MSM Deferral Research Project
As part of her 2016 announcement about the move from a 5-yr MSM deferral to a 1-yr MSM deferral, the Minister of Health also allocated $3M to implement an MSM Research Program. The objective of the MSM Research Program is to ensure the generation of adequate evidence-based research for alternative screening approaches for blood and plasma donors, which could evolve the current MSM deferral policywhile maintaining the safety of the blood supply. 

One of these research project applications, on the advice of CBS, is asking the NRBDO members to participate in their research. The research project is still in the development stages, but once they have determined what type of input they desire from the NRBDO membership, we will pass this info along to you. 
4. New PMPRB Report Released
From the PMPRB:

The Patented Medicine Prices Review Board (PMPRB), through the National Prescription Drug Utilization Information System (NPDUIS) research initiative, today published the first edition of Meds Entry Watch, a new annual publication that provides information on recently launched drugs in Canada and select international markets. This report series is designed to inform decision makers, researchers, and patients of the evolving market dynamics of emerging drug therapies.
This edition provides a benchmark analysis of the international availability, launch sequence, market uptake, sales, and prices of new drugs introduced to Canadian and select international markets from 2009 to 2014, and offers a preliminary analysis of drugs launched in 2015.
The study found that high-priced, so-called “specialty drugs” are increasingly dominating the new drug landscape in Canada and internationally. Results also show that the drugs that account for the vast majority of new drug sales internationally over the time period studied are available in Canada. Moreover, the average time between a drug’s launch in its country of origin and its entry onto the Canadian market is well within the timelines observed in the United States (US) and Europe. In fact, many new drugs enter the Canadian market second only to the US. Whereas the prices of new drugs in Canada are also generally in line with those observed in the European markets analyzed—and considerably below those in the US—foreign prices declined relative to Canadian levels over time.
The report is now available on the PMPRB website in PDF and accessible HTML formats:
News Release:

NPDUIS Research Agenda:
5. NRBDO Comprehensive Care Conference 
Save the Date!

Our NRBDO Comprehensive Care Conference is coming up this Fall!
This conference will feature case studies of HAE, PID and rare bleeding disorders, to bring examples of care models, registries, and benefits to both the patients and caregivers as well as to the health system.

In the afternoon there will be breakout sessions for each patient group to take what has been presented and determine goals for next steps, so start thinking now about which of your members are advocacy-minded and should be attending, as well as which doctors, hospital administrators, and/or political champions you want to see invited. Have a suggestion for the invitee list? Email me here
Copyright © 2017 Network of Rare Blood Disorder Organizations, All rights reserved.

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