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Rare Disease Support: Research, Diagnosis, and Awareness Boost

This act aims to improve the lives of individuals with rare diseases by increasing funding for research, developing monitoring systems, and raising awareness among healthcare professionals. Citizens can expect better diagnosis, access to information, and potentially new treatment methods, impacting their health and quality of life.
Key points
Increased funding for rare disease research and the establishment of regional centers of excellence.
Creation of a national rare disease surveillance system to collect data on occurrence and progression.
Enhanced awareness and knowledge of rare diseases among healthcare providers for faster diagnosis.
Updating a key report on rare diseases to support further research and treatment development.
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Status: Expired
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Additional Information
Print number: 117_HR_9676
Sponsor: Rep. Carson, Andre [D-IN-7]
Process start date: 2022-12-22
System Note: Lustra is free, publicly auditable civic infrastructure — full source code available on GitHub. You are reading sterilized legislative data, processed by our radical neutrality engine to strip political spin and retain factual mechanics. We process only official government data. Original documents remain the authoritative source—always verify them if you can.
Summarized by: gemini-2.5-flash-preview-05-20
Source data: api.congress.gov
AI work logs for this document launch

OFFICIAL LEGAL TITLE

RARE Act of 2022

FREQUENTLY ASKED QUESTIONS

What is the official ID of this bill?

The official print number for this legislation is 117_HR_9676.

Which chamber initiated this legislation?

This legislation was initiated in the House of Representatives.

When did the legislative process begin?

The process officially started on 2022-12-22.

What are the main provisions?

Key points include:

  • Increased funding for rare disease research and the establishment of regional centers of excellence.
  • Creation of a national rare disease surveillance system to collect data on occurrence and progression.
  • Enhanced awareness and knowledge of rare diseases among healthcare providers for faster diagnosis.
  • Updating a key report on rare diseases to support further research and treatment development.
What is the specific legal status?

The current status is Expired.

Where can I read the full text of this legislation?

The full official text is available at: View full text

Who is the primary sponsor?

The primary sponsor is Rep. Carson, Andre [D-IN-7].

What is the latest detailed status?

The latest detailed status is: Referred to the House Committee on Energy and Commerce.

Is this summary verified?

Yes. This content was analyzed by AI and verified by the Lustra Judge System on 2025-12-28.

What is the impact of this bill?

We don't know—that is up to you to decide. Summarizing raw data with AI is fundamentally different from predicting socio-economic outcomes. As of 2026, we believe impact assessment strictly requires a human in the loop to verify and judge.

CATEGORIES

Health