Forum Posts

shirg9
Jun 08, 2021
In SPIN Forum
In our most recent blog post, our Dutch team discusses a new ground-breaking policy, short-formed as 'Fast'. This programme aims to accelerate the relatively slow, incremental, and high-priced innovation in the pharmaceutical field. Read more about this new policy here: https://www.socialpharmaceuticalinnovation.org/post/combining-money-and-health-in-dutch-future-affordable-and-sustainable-therapy-policy But do we think this initiative is enough? Share your thoughts with us below
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shirg9
May 14, 2021
In SPIN Forum
In our most recent blog post, the Canadian research team delves into the long-discussed subject of pharmacare in Canada, and the recent related changes that may or may not be taking place. Read more about it here: Do you think we can expect to see this before the Liberal government leaves office? Share your thoughts with us below!
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shirg9
Apr 11, 2021
In SPIN Forum
One of our Canadian researchers delves into the value of patient registries and the specific and unique role that they can play in the treatment, research, and unifications of the rare disease community. Read more about it here: https://www.socialpharmaceuticalinnovation.org/post/the-role-of-patient-registries-in-rare-diseases Do you think rare disease registries should be funded privately by industry or publicly by the government? Share your ideas with us below!
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shirg9
Apr 06, 2021
In SPIN Forum
Our Canadian team has written a response to Health Canada's call for engagement on a national strategy for high-cost drugs for rare diseases. Read more about it here: https://www.socialpharmaceuticalinnovation.org/post/canadian-response-to-the-online-engagement-national-strategy-for-high-cost-drugs-for-rare-diseases What do you think needs to be added or considered when developing a national rare disease strategy?
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shirg9
Mar 19, 2021
In SPIN Forum
Our Brazilian team provides some background insight into the way that the Brazilian healthcare system came about, the constitutional acts that accompanied it, and the lasting effects that this process has had in our blog post: https://www.socialpharmaceuticalinnovation.org/post/health-rights-and-rare-diseases-in-brazil Share your thoughts below!
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shirg9
Mar 11, 2021
In SPIN Forum
Recently, the European Parliament was presented with the results of an important European foresight exercise on the future of rare disease policy called Rare2030. Our colleagues from the Netherlands describe this policy and its recommendations here: https://www.socialpharmaceuticalinnovation.org/post/rare-disease-foresight-what-should-future-rare-disease-policy-look-like Share with us below what you think of these policy recommendations.
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shirg9
Feb 12, 2021
In SPIN Forum
In this blog, we reflect on the implications of the COVID-19 on patients with rare diseases. While the approval of the COVID-19 vaccine was one accompanied with great excitement all around the world, for patients in the rare disease community, the implications are a little more complicated. To read more: https://www.socialpharmaceuticalinnovation.org/post/caught-between-rare-disease-and-covid-19 Share your thoughts on this with us below:
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shirg9
Feb 08, 2021
In SPIN Forum
In this blog, members from our research team in Canada share a little bit of insight into Health Canada's newest call for participation in the development of a national strategy for high-cost drugs. To read more: https://www.socialpharmaceuticalinnovation.org/post/national-strategy-on-high-cost-drug-discussion-paper Share your thoughts on this with us below:
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shirg9
Jan 14, 2021
In SPIN Forum
In this blog, members from our research team in the Netherlands share an interesting insight into horizontal scans. Many investments have been made into making better predictions, and being able to forecast the horizon's future, de-emphasize that we could – and probably should – also spend time on the horizon of the past. To read more: https://www.socialpharmaceuticalinnovation.org/post/horizontal-scanning-looking-forward-but-how-about-looking-back Share your thoughts on this with us below:
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shirg9
Jan 11, 2021
In SPIN Forum
Join our Canadian team in thinking critically about the implications of Health Canada approving its first-ever gene therapy, Zolgensma for spinal muscular atrophy (SMA). Or perhaps share with us what is happening in your local contexts in the case of Zolgensma.
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shirg9
Dec 18, 2020
In SPIN Forum
Please see our blog post from Brazilian members of our research consortium on the Brazilian government and judicial system's difficulty in maintaining a universal health care system while struggling to afford drugs for rare diseases: https://www.socialpharmaceuticalinnovation.org/post/upstream-judicialization-the-possible-revolution
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shirg9
Dec 12, 2020
In SPIN Forum
The research team in the Netherlands asks a very important question about the implications of the European Comission's proposition for shortening administrative procedures and investing more money in rare disease research, in addition to promoting increased and faster sharing of research data. This final proposition will likely not sit well with the pharmaceutical industry. To read their post, follow this link: https://www.socialpharmaceuticalinnovation.org/post/rare-disease-research-in-europe-will-academia-pick-up-the-gauntlet Please share your opinions on this matter below.
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shirg9
Dec 04, 2020
In SPIN Forum
See what our Canadian research team thinks of the news that Canadian drug manufacturers have offered to pay Canada $1 billion CAD to cancel the new PMPRB pricing guidelines. What are your thoughts?
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shirg9
Nov 20, 2020
In SPIN Forum
Please see our blog post from Brazilian members of our research consortium on important discussions on expensive drugs for rare disease taking place in the Brazilian context https://www.socialpharmaceuticalinnovation.org/post/the-most-expensive-medicine-in-the-world-and-the-false-dilemmas
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shirg9
Nov 12, 2020
In SPIN Forum
Please see our blog post from Netherlands members of our research consortium on processes by which rare drugs are reviewed and to learn about the PhD dissertation of one of our team members: https://www.socialpharmaceuticalinnovation.org/post/rare-drugs-in-the-netherland-context
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shirg9
Nov 04, 2020
In SPIN Forum
Please see our blog post from Canadian members of our research consortium on developments towards a Canadian national rare disease policy, its challenges, potentialities, and continued need for social pharmaceutical innovation: https://www.socialpharmaceuticalinnovation.org/post/is-price-capping-an-answer-for-expensive-drugs-for-rare-diseases-in-canada
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shirg9
Oct 09, 2020
In SPIN Forum
Please see our blog post from Canadian members of our research consortium on developments towards a Canadian national rare disease policy, its challenges, potentialities and continued need for social pharmaceutical innovation: https://www.socialpharmaceuticalinnovation.org/post/covid-19-impact-on-canadians-with-rare-diseases
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