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Rare Disease Foresight: What Should Future Rare Disease Policy Look Like?
Rare Disease Day and the rare disease policy, Rare2030
Wouter Boon
Mar 10, 20212 min read
33 views
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Caught Between Rare Disease and COVID-19
...fragile people, elderly and those with underlying medical conditions or lack of resources are especially at risk
Rob Hagendijk
Feb 12, 20214 min read
23 views
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NATIONAL STRATEGY ON HIGH COST DRUGS DISCUSSION PAPER
On January 27th, Health Canada announced that all Canadians will be invited to share their views on a national rare disease policy
Shir Grunebaum
Feb 8, 20213 min read
20 views
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Horizontal Scanning: Looking Forward, But How About Looking Back?
Many investments have been made into making better predictions and being able to forecast the horizon's future, de-emphasize that we could
thkleinhout-vliek
Jan 13, 20213 min read
41 views
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First Gene Therapy Approved by Health Canada
On December 16th, 2020, Health Canada announced that it would approve its first-ever gene in Canada - Zolgensma for SMA patients
Shir Grunebaum
Jan 8, 20216 min read
116 views
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Upstream Judicialization: The Possible Revolution?
Our Brazilian team provide important insight into the declaration of a universal health care system, while balancing rare disease treatments
Claudio Cordovil Oliveira
Dec 18, 20207 min read
12 views
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Rare Disease Research In Europe – Will Academia Pick Up The Gauntlet?
Implications of shortening administrative procedures and investing more money on rare disease research and information sharing.
Tineke Kleihout-Vliek
Dec 11, 20202 min read
20 views
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Drugmakers Offer Canada $1 billion To Scrap New Pricing Guidelines
...if “other costly reforms are shelved, the industry is willing to spend C$1 billion over the same period to boost local manufacturing.
Conor Douglas
Dec 4, 20204 min read
37 views
1 comment


High Prices for Innovative Treatments Pose Threats to the Social Security System in France
In France, the alarm is being raised: our collective consent to pay for the funding of therapeutic innovation to defeat rare diseases is...
Florence Paterson
Dec 1, 20203 min read
42 views
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The 'Most Expensive Medicine in the World' and the False Dilemmas
What is our government doing to face the challenges created by new biotechnological innovations that are already knocking on the door?
Claudio Cordovil Oliveira
Dec 1, 20203 min read
18 views
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Rare Drugs In the Netherland Context - A Question of Necessity
In the Netherlands, societal debate regularly focuses on drugs for rare diseases. This post begins to uncover the coverage process.
Tineke Kleihout-Vliek
Nov 11, 20202 min read
23 views
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Is Price Capping an Answer for Expensive Drugs for Rare Diseases in Canada?
The price tag on many drugs for rare diseases (DRDs) is a significant sticking point for both public and private payers
Conor Douglas
Nov 4, 20205 min read
22 views
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COVID-19 Impact on Canadians with Rare Diseases
Overall, Canadians with rare diseases and global citizens alike have been significantly impacted by COVID-19 in many unimaginable ways.
Conor Douglas
Oct 9, 20204 min read
11 views
0 comments


Canada 2019 Budget Finally Includes Rare Disease
In 2019, with the most recent election of the Trudeau-led Liberal government, the subject of rare diseases received national attention
Shir Grunebaum
Sep 1, 20204 min read
63 views
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