Rare Disease Advising Program Intake Form

Version 1 · Effective October 29, 2026

1. Scope

This policy explains how RTW Foundation (“RTWF”, “we”) collects, uses, stores, and shares information your organization provides to the Rare Disease Advisory Program (RDAP). It covers the RDAP intake form, files you upload, meetings between your organization and RTWF staff, and related correspondence.

It applies to information about your organization and to personal information about the people who represent it (names, titles, contact details, and what they say in meetings).

RTW Foundation is the philanthropic arm of RTW Investments.

2. Information we collect

• Form responses. Everything you enter in the RDAP intake form, including organization details and the names, titles, email addresses, and phone numbers of your contacts.
• Uploaded files. Any documents you attach to your submission, and their contents.
• Meeting records. Agendas, notes, transcripts, and summaries from meetings between your organization and RTWF staff, including those produced with the tools described in Sections 4 and 5.
• Correspondence and staff notes. Emails with you and internal notes RTWF staff write about our relationship with your organization.
• Technical logs. Timestamps, access records, and error reports needed to operate and secure our system.

We do not ask for individual medical records. If your submission describes a specific person’s health (for example, a founder’s family member), please share only what is needed to describe your organization’s work.

3. How we use information

We use your information to:

• evaluate your organization for RDAP;
• prepare for, conduct, and follow up on meetings with you;
• keep an accurate record of our relationship, including decisions and commitments made on either side;
• communicate with you about RDAP; and
• operate, secure, and troubleshoot our systems.

We do not use your information for marketing. We do not sell it and never will.

4. AI processing

RTWF uses Claude, an AI model made by Anthropic, inside our internal Partner Relationship Manager system. Claude reads form submissions, summarizes uploaded documents, drafts meeting agendas and notes, and flags items for staff attention.

RTWF staff review AI output before relying on it. AI output alone does not decide your organization’s status in RDAP, and it is not used to evaluate or rank intake submissions.

To do this work, your form text, document contents, and notes are sent to Anthropic through its commercial API. Anthropic processes them under its Commercial Terms of Service, which state that Anthropic may not train its models on customer content. Anthropic does not receive your information for any purpose other than processing our requests.

Apart from Anthropic and the providers Granola uses to produce meeting notes (Section 5), no other AI vendor receives your information.

5. Meeting notes and transcription

RTWF staff use Granola, a meeting-notes application, in meetings with your organization. Granola captures audio from the staff member’s device, transcribes it in real time, and deletes the audio once transcription is complete. It does not join the meeting as a separate participant.

The transcript and the notes produced from it are stored by Granola on servers in the United States and in our system. To produce them, Granola uses third-party transcription and AI providers; Granola names Deepgram, AssemblyAI, OpenAI, and Anthropic as examples and states that these providers are contractually barred from training on meeting data. See Granola’s security page.

By participating in a meeting with RTWF, you agree that we may transcribe it with Granola. We will tell you at the start of a meeting when it is being transcribed. If you do not want a meeting transcribed, say so at the start and we will take notes manually instead. You can also ask us to delete an existing transcript (Section 9).

6. Where information is stored and who provides services

Your information is stored and processed in the United States by the providers below. Each receives only what its service requires and is bound by its own terms with RTWF.

7. Who can see your information

Within RTWF, access is limited to RDAP staff through individually authenticated, role-based accounts. Changes are logged.

We share your information only:

• with the service providers in Section 6, to the extent their services require;
• when required by law, legal process, or to protect the rights or safety of any person; or
• with other organizations when you have given consent.

We do not sell your information, and we do not share it with other RTW Investments affiliates.

8. How long we keep information

We keep your organization’s records while it is under consideration for or participating in RDAP, and indefinitely after our last interaction with your organization, unless you ask us to delete them sooner (Section 9).

Database and file backups are retained indefinitely. Meeting transcripts held by Granola are retained indefinitely unless you ask for deletion.

We may keep a minimal record after deletion where the law requires it or to document that a deletion request was made and fulfilled.

9. Your choices

You can ask to see, correct, or delete your organization’s information at any time by emailing prm@rtwf.org. To protect your information, we confirm requests with your organization’s listed contact before acting on them.

Deletion removes your submission, uploaded files, meeting records, and notes from our system promptly after we confirm your request. We will also delete the corresponding transcripts and notes from Granola. Backups are retained as described in Section 8, which also describes the minimal record we may keep.

You can decline transcription of any meeting (Section 5), and you can ask us not to use AI tools on your submission; in that case staff will review it manually, which may take longer.

10. Security

Your information is encrypted in transit and at rest by the providers in Section 6. Our system requires individual logins, limits what each account can see and do by role, and logs changes to records. Error monitoring alerts staff to system faults.

No system is completely secure. We cannot guarantee that your information will never be accessed or disclosed without authorization, but we work to prevent it and to respond quickly if it happens (Section 11).

11. Security incidents

If we confirm a security incident that affects your information, we will notify your organization’s listed contact within one week of confirming it. The notice will describe what happened, what information was involved, what we have done in response, and what you can do.

12. Organizations outside the United States

Your information is stored and processed in the United States, where privacy laws may differ from those in your country. By submitting information to RDAP, you agree to this transfer. If your organization is in the European Union, the United Kingdom, or another jurisdiction that requires specific data-processing terms, contact us before submitting and we will discuss what we can offer.

13. Changes to this policy

We may update this policy. The version number and effective date at the top of this document show the current version. If a change materially affects how we handle your information, we will notify your organization’s listed contact before it takes effect.

14. Contact

Questions, requests, and concerns about this policy go to prm@rtwf.org.

RTW Foundation
40 10th Avenue, 3rd Floor
New York, NY 10014