Rare Disease Research: Slides (2)

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Rare Disease Research: Slides (2)

Slides three, four, and five of this presentation have been populated with the programmatic areas and funding information for EURORDIS, RDI, and IF. These non-profit organizations were established to combat rare diseases across the globe.

EURORDIS

  • This organization was founded in 1997.
  • The revenue for 2018 was 6,497,858. This is equivalent to $7.2 million.
  • The main source of funding are the EURORDIS’ members.
  • The French Muscular Dystrophy Association (FMA) has also been a contributor.

RDI

International Federation for Spina Bifida and Hydrocephalus (IF-SBH/IF)

  • The total income for 2018 was (1,228,909.52) $1.36 million.
  • IF is funded by Rights, Equality, and Citizenship program of the European Union, the Atlas Alliance, Bühler, Nouryon, and Mühlenchemie.
  • This organization was founded 1979.

Research Strategy

Our research team was unable to provide Rare Diseases International (RDI)'s income. We searched for this information through annual reports, medical publications, and any news sources. Our thorough analysis of their website and web presence was also unable to determine how much income they collect. As a triangulation, we provided information on size based off their expansion and the number of countries where they are active.

Programmatic areas for each organization has been incorporated in the overview and focus, accomplishment, and future goals for each organization.
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Rare Disease Research: Slides (3)

Slide seven, eight, and nine of this presentation have been populated with the programmatic areas and funding information for Alexion, Biomarin, and CSL Behring. These for-profit organizations were established to combat rare diseases across the globe.

Alexion

Biomarin

CSL Behring

Research Strategy

Our research team essential insights. Publicly funded companies receiving their funding from the public. For this reason, we were unable to provide information on the investors. For CSL Behring, it is a part of CSL which is a publicly traded company even though it is not. For this reason, this for-profit private organization is most likely funded by CSL and investors. Our thorough research of financial reports, industry publications/reports, company profiles, and their official website did not yield any information.

Programmatic areas for each organization has been incorporated in the overview and focus, accomplishment, and future goals for each organization.
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Rare Disease Research: Slides (4)

Slides 11, 12, and 13 of this presentation have been populated with the programmatic areas and funding information for these academic institutions: UMass Medical School, The University of Pennsylvania, and University of Oxford. These academic institutions have ongoing research into various rare diseases.

 The Li Weibo Institute for Rare Disease Research at UMass Medical School 

The University of Pennsylvania/Perelman School of Medicine/Orphan Disease Center 

  • The Orphan Disease Center was established in 2011.
  • Their corporate partners include Biogen, REGENXBIO, Takeda Pharmaceuticals, Ultragenyx, and PassageBio.

 University of Oxford/Oxford-Harrington Rare Disease Centre 

Research Strategy

The investors that have been identified here are those whose information is readily available and also those that have invested a significant amount. Additionally, the Oxford-Harrington Rare Disease Centre does not seem to have made its funding information public. This could mean that the two institutions that came together could be the primary source of funding. We searched through several publications, press releases, official sites for these institutions but still did not identify the necessary information that would point at the two institutions as the source of funding or any other alternative sources.

Programmatic areas for each organization has been incorporated in the overview and focus, accomplishment, and future goals for each organization.
Sources
Sources