NRBDO Spring Forum 2020
April 25-26, 2020
THE TORONTO AIRPORT MARRIOTT
901 Dixon Rd. Toronto, ON
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For many of our member patient groups, exciting innovative and/or curative therapies are on the way.
Our focus at this year's Spring Forum will be on Innovative and Curative Therapies, as a lead up to our Fall Conference on Access to Innovative Therapies. Dr. Kevin Kuo is back with a presentation to help us better understand genetics and gene therapies, and our member groups will be given the change to highlight innovations for their therapeutic area. See below for more information.
As always, the NRBDO will pay for the travel costs of 2 reps per member group. Additional representatives and/or medical advisors/nurses affiliated with your organization can participate who either live locally or with travel expenses covered by the member group. No registration costs will be charged for these additional attendees.
As usual, the Sunday morning meeting will be for members only, including 2 representatives each.
RSVP deadline: March 18th, 2020
Please join us.
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Notice to Members: Annual General Meeting and Call for Nominations
Sunday, April 26
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Please be advised that the 2020 NRBDO Annual General Meeting will take place on the morning of April 26, 2020 at the Toronto Airport Marriott as part of our NRBDO Spring Forum.
Members are encouraged to consider nominating themselves for the NRBDO Board. The Nomination form, which includes more details, can be found here.
The nomination process will close April 5, 2020, as per our board nomination policy (21 days before the AGM).
If you have any questions, simply reply to this email.
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Patient Group Presentations
Each patient group will be given 10 minutes to present on relevant therapeutic innovations that they are excited about for their patient population.
Please keep your presentation to 5 slides, and answer the following 5 questions:
- What is it and who is making it?
- What does it do?
- What’s the timeline for clinical trials and coming to market?
- What would this mean for your patient community?
- What barriers to access do you foresee?
Slide decks can be submitted to admin@nrbdo.ca by April 22, 2020. Thank you!
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1. Welcome to the newest NRBDO member, Alpha-1 Canada
We are pleased to have Alpha-1 Canada join our coalition! The NRBDO is now 12 member groups strong.
2. PMPRB Submission
The NRBDO has made a submission as part of the Patented Medicines Pricing Review Board Consultation on their new Guidelines. You can read it here.
3. Fall Conference Save the Date
Please save the dates of November 6-7 for our Fall NRBDO Conference on Access to Innovative Therapies. Please note that this is a Friday and Saturday. More information to follow.
4. CORD Gala - Takeda Table Invitation
The NRBDO has been offered one seat at the Takeda table at the CORD Gala coming up in Ottawa in March. If you are interested in representing the NRBDO at this event, please reply to this email as soon as possible.
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The NRBDO is a pan-Canadian coalition of patient organizations representing people with rare blood disorders and/or people with a chronic condition who are recipients of blood or blood products or their alternatives. Together we work to educate and advocate for Canadians affected by rare blood disorders.
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