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  • Michael W

Behind the Scenes of Research Funding

Updated: Oct 29, 2023

How does the funding of research happen?

Doing research is expensive!

Research funds are needed for many things, including personnel (i.e., the people who conduct the research) and equipment (e.g., to analyze blood samples). Without funding, research can’t happen. As a result, researchers are always on the hunt for funding, which is not an easy task.

Many people think that researchers who work at an academic institution can simply ask their home institution for money to do their research. The truth is universities don’t give their researchers money to conduct their research. Researchers have to apply for funds from external sources like government agencies and private organizations.

Here's the thing: getting funding isn't as simple as asking for it.

Researchers must write detailed plans explaining what they want to study, how they’ll do it, and why it matters. These plans are called proposals, and they are often more than 40 single-spaced pages. Experts then review and assess the proposals based on scientific merit, feasibility, and potential impact.

Most proposals go unfunded. For example, only 20% of grant proposals submitted to the National Institute of Health (NIH) in the United States are funded. And researchers can only submit one proposal per year.

So, when you hear about universities doing research, remember—it's not just a matter of getting money. It's about coming up with smart ideas, showing why they're important, and then using that money to uncover new things that help us understand the world better.

What are some sources of research funding?

Here are some examples of how researchers may obtain funding to study a rare disease like CUL3-related neurodevelopmental disorder.

Research Fellowship and Training Grants: Early-career researchers can apply for fellowships and training grants that provide financial support for their research. These grants often come from organizations that prioritize developing the next generation of researchers in the field.

Government Grants and Agencies: Researchers can apply for grants from government agencies that fund medical and scientific research, such as the NIH. The NIH has specific funding mechanisms and initiatives focused on rare diseases.

Private Foundations: Many private foundations are dedicated to funding research related to specific rare diseases. Organizations like the Rare Diseases Clinical Research Network (RDCRN) and the National Organization for Rare Disorders (NORD) provide grants and support for researchers studying various rare conditions. Researchers need to align their proposals with the foundation's mission and guidelines.

Orphan Drug Grants: Some rare diseases might qualify for orphan drug designation, which provides incentives and grants to researchers and companies developing treatments for rare conditions. These grants can come from government agencies or private organizations focused on advancing therapies for rare diseases.

Corporate Partnerships: Pharmaceutical companies and biotechnology firms may have an interest in researching and developing treatments for rare diseases. Researchers can seek partnerships or collaborations with these companies, potentially leading to sponsored research agreements or joint projects.

…And now where we come in!

Patient Advocacy Organizations: Advocacy groups for specific rare diseases often raise funds to support research efforts. Researchers can establish relationships with these organizations, which might result in funding, access to patient data, and collaboration opportunities.

Why do researchers who study rare diseases need Patient Advocacy Organization funding?

Securing funding for rare diseases presents a unique set of challenges that stem from their rarity and the specialized attention they require.

Rare diseases are often overshadowed by more common health issues, leading to limited awareness and advocacy efforts. As a result, funding agencies and potential donors may not fully grasp the urgency and significance of research in this area, making it difficult to attract financial support.

Furthermore, conducting research on rare diseases can be expensive due to the need for specialized equipment, careful participant recruitment, and data collection efforts. Funding agencies might be hesitant to allocate significant resources to a small patient population, considering the potential cost-effectiveness of the research.

Moreover, pharmaceutical companies may be reluctant to invest in research for rare diseases as the small market potential for treatments or therapies might not align with their business interests - further reducing a potential source of funding and support.

In light of these challenges, researchers studying rare diseases often need to employ creative strategies to secure funding. This might include forming collaborations, leveraging established (or establishing) patient registries, and seeking out specialized funding sources or philanthropic donors who are passionate about addressing these neglected conditions.

Despite the obstacles, researchers in this field are driven by the potential to make a significant impact on the lives of individuals affected by these diseases and to contribute valuable insights to the broader medical community.

What should I take away from this blog post?

There are unique challenges when it comes to funding research on rare diseases. That's why raising funds for 'CUL3 Support & Awareness' matters so much!

By joining hands and supporting our cause, we directly add fuel to the fire of research, awareness campaigns, and support networks that rare disease communities need.

Knowing how hard it is for researchers to get funds for their work on rare diseases makes every contribution like a building block toward making things better for people living with these conditions.


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