Wishlist Representation Guidelines

Effective Date: June 8, 2026
 

Purpose
 

Many Registry profiles on RebuildAfterStroke are created and managed by spouses, family members, caregivers, guardians, friends, or other supporters on behalf of a stroke survivor.
 

These Guidelines explain our expectations regarding the creation and management of Wishlists that represent another individual.
 

Our goal is to support recovery while respecting personal dignity, privacy, and individual choice.

 

Our Guiding Principle
 

Whenever reasonably possible, Registry profiles should be created and managed with the knowledge and consent of the individual being represented.
 

We recognize that recovery circumstances vary widely and that some individuals may require assistance from caregivers, family members, or authorized representatives.
 

These Guidelines are intended to encourage respectful and responsible stewardship of Registry information.
 

Who May Create a Registry
 

A Registry may be created by:
 

· the individual being represented;
 

· a spouse or partner;
 

· a parent or guardian;
 

· an adult child;
 

· another family member;
 

· a caregiver;
 

· a legally authorized representative; or
 

· another individual acting with the knowledge, permission, or support of the person being represented.
 

By creating a Registry on behalf of another individual, you represent that you have permission or appropriate authority to do so.

 

Responsibilities of Registry Managers
 

If you create or manage a Registry on behalf of another person, you are expected to:
 

· act in good faith;
 

· respect the individual’s privacy;
 

· respect the individual’s preferences whenever reasonably possible;
 

· maintain accurate information;
 

· update information when circumstances change;
 

· remove information that is no longer appropriate; and
 

· comply with the Terms of Use and Community Guidelines.
 

Registry managers should carefully consider what information is shared publicly and should avoid disclosing information that the represented individual would reasonably consider private or sensitive.
 

Sharing Recovery Information
 

Recovery journeys are deeply personal.
 

When sharing information about another individual, Registry managers should use discretion and sensitivity.
 

Whenever possible, Registry content should focus on:
 

· recovery-related needs;
 

· caregiving needs;
 

· equipment needs;
 

· practical assistance;

· support opportunities; and
 

· recovery goals.
 

Registry managers should avoid sharing unnecessary personal, financial, legal, or highly sensitive medical details.

 

Privacy Considerations
 

Before selecting a visibility setting, Registry managers should consider:
 

· the wishes of the represented individual;
 

· the sensitivity of the information being shared;
 

· the potential audience that may view the Registry; and
 

· the possibility that public information may be copied, archived, or redistributed.
 

RebuildAfterStroke encourages the use of the least public visibility setting necessary to accomplish the Registry’s purpose.
 

If Circumstances Change
 

Recovery situations often evolve.
 

If the represented individual later wishes to modify, limit, transfer, or remove a Registry, Registry managers are encouraged to respect those wishes whenever reasonably possible.
 

Similarly, if family circumstances change, Registry information should be updated to remain accurate and appropriate.

 

Questions Regarding Authorization
 

Occasionally questions may arise regarding:
 

· who has authority to manage a Registry;
 

· whether information was shared with appropriate permission;
 

· the accuracy of Registry content; or
 

· the wishes of the represented individual.
 

RebuildAfterStroke may request additional information when concerns are brought to our attention.
 

Actions RebuildAfterStroke May Take
 

To protect users and maintain trust in the Registry, RebuildAfterStroke may, in its sole discretion:
 

· request clarification or additional information;
 

· temporarily restrict access to a Registry;
 

· modify visibility settings;
 

· suspend a Registry;
 

· transfer management of a Registry when appropriate; or
 

· remove Registry content.
 

Such actions may be taken when concerns arise regarding:
 

· authorization;
 

· privacy;
 

· safety;
 

· accuracy;
 

· fraud;
 

· misuse of the Registry; or
 

· compliance with Site policies.
 

Disputes

RebuildAfterStroke is not a court, mediator, guardian, healthcare provider, or legal authority.
 

We generally do not attempt to resolve family disputes, caregiving disagreements, or questions regarding legal rights between individuals.
 

When disputes arise, we may take reasonable steps to protect privacy, reduce risk, and maintain the integrity of the Registry while encouraging affected parties to resolve matters directly or through appropriate legal or professional channels.
 

Prioritizing Individual Dignity and Privacy
 

The mission of RebuildAfterStroke is to support recovery and improve quality of life.
 

Accordingly, we encourage all Registry managers to approach their role with empathy, honesty, respect, and sensitivity to the wishes and dignity of the person being represented.
 

Contact
 

Questions regarding these Guidelines may be directed to:
 

support@rebuildafterstroke.com
 

RebuildAfterStroke.org