Voice of the Rare Carrier

A 6 Part Workshop Series for Carriers of Rare Diseases

 
 

Application Process

 

How to Apply

Before completing the application process, please review the program policies to ensure that your application will meet the requirements.

Submission Instructions

Questions

Any questions should be directed to programs2@angelaidcares.org.

Timing

Applicants must submit a completed application before 11:59pm PST on June 15, 2021.

Eligibility Criteria

To be eligible for the award, an applicant must meet the following requirements:

  • 18 years or older (by June 15, 2021)

  • Diagnosed as the carrier of any rare disease or undiagnosed as the suspected carrier of any rare disease

  • Access to an internet connection and personal device to connect

  • Ability to participate via ZOOM video

  • Interest in communicating either verbally or via chat

  • Acceptance of Photo, Video & Quote Release Form

  • Acceptance of Code of Conduct Guidelines

Late submissions will not be accepted for any reason, other than issues with the ANGEL AID submission form. Applications received by ANGEL AID after the deadline will not be reviewed.

Participation Agreement

Awardees must sign a Participation Non-Disclosure Agreement which will safeguard the privacy of their conversations during the workshop as well as other participants.  This agreement will be sent to Awardees shortly after they have been selected and must be signed before Awardees are announced.

Confidentiality

As a part of ANGEL AID’s administration of the ‘Voice of the Rare Carrier’ program, all hosts and resources are required to complete Confidentiality & Non-Disclosure Agreement with ANGEL AID.

Intellectual Property

Non-public applicant information is always kept confidential (and limited in distribution to the reviewers and ANGEL AID administrative team). For those selected, the Awardee’s name and rare disease affiliation, as well as participation in the ‘Voice of the Rare Carrier, may be used by ANGEL AID for publicity and marketing purposes (on the ANGEL AID website, new releases, etc.) at ANGEL AID’s sole discretion.

ANGEL AID Review Panel

The review panel will consist of the ANGEL AID administrative team.

Awardees will be selected based on:

  • Timeliness of the application submission

  • Access to required technology and tools

  • Availability to attend all classes

  • Enthusiasm for participating in the group dynamic

  • Potential for impact on the broader rare disease community

Applicants who fail to fill out their applications by the deadline and/or in accordance with the detailed instructions are subject to disqualification at the outset of the review period or any time during the review period.

Comments from Review Committee

ANGEL AID is unable to provide reviewers’ comments or feedback.

Participation Commitment

ANGEL AID and Dr. Chelsey Hauge will make every attempt to ensure selected participants can access and participate in each of the six sessions. If you, or your applicant, miss 2 or more of the 6 workshops (for reasons other than medical), we reserve the right to give your spot to another participant.

Code of Conduct

ANGEL AID and their partner, Dr. Chelsey Hauge, will abide by the ANGEL AID Code of Conduct guidelines which can be reviewed here. Anyone who violates these guidelines will be removed from hosting or participating in the workshop immediately.

ANGEL AID Code of Conduct guidelines can be viewed here.

Intellectual Property Guidelines

Non-public applicant information is always kept confidential (and limited in distribution to the reviewers and ANGEL AID administrative team). 

For those selected, the Awardee’s name and rare disease affiliation, as well as participation in the ‘Voice of the Rare Carrier’, may be used by ANGEL AID for publicity and marketing purposes (on the ANGEL AID website, new releases, etc.) at ANGEL AID’s sole discretion.

Participants grant ANGEL AID and its designees an irrevocable, royalty-free, non-exclusive, worldwide perpetual license to use and distribute the participants final project and his/her name, city, and state of residence in any and all media now or hereafter known for purposes of promotion, advertising and fundraising, and, except as otherwise stated herein, without further compensation, notification or permission, unless prohibited by law.

ANGEL AID and Dr. Chelsey Hauge reserve the rights to all materials produced within the class, including class recordings, for purposes of promotion, press, or fundraising. Copies of the graphic created from the discussions, explorations, and discoveries may be made available as auction item, giveaway, or for sale on ANGEL AID or partner websites.

Changes to Project

A significant change in the participation should be discussed with ANGEL AID’s Chief Executive Officer.

Awards may not be transferred to another individual.

Compliance & Administrative Matters

Awards are managed by ANGEL AID.  ANGEL AID staff will assure compliance with program policies and will be responsible for all administrative matters.

ANGEL AID and Dr. Chelsey Hauge are solely responsible for execution of the project, including compliance with all relevant Federal and State laws and guidelines.

ANGEL AID reserves the right to refine and amend policies as required.

Disclosure

This is not a medical program.  If you have questions about your medical condition, please contact a member of your medical team.

Questions

Any questions should be directed to programs2@angelaidcares.org.