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Code of Conduct for Membership

The Rare Advocacy Movement (RAM) is a group of patient advocacy professionals dedicated to the overall advancement of the rare disease community-based landscape and community-focused allied stakeholders. Membership and participation in RAM is subject to the observance of this Code of Conduct for Membership (“Code of Conduct”). All members and affiliates of RAM are expected to abide by this established Code of Conduct. Any RAM member or affiliate who may violate this Code of Conduct in parts and/or in its entirety will be subject to removal from the RAM membership and/or affiliation.

  1. Consider the perspectives of all involved rare disease stakeholders and make all reasonable efforts to professionally satisfy the needs and concerns required for relevance, sustainability and effectiveness in accomplishing any established patient advocacy focused mission(s), if applicable.

  2. Strive for excellence and innovation while demonstrating professional competence, respect and responsiveness to all rare disease stakeholders and affected individuals and/or involved perspectives.

  3. Make a professional effort to understand, respect and collaborate with other rare disease stakeholders.

  4. Contribute to an overall collaborative professional culture that respects the diverse, individual contributions of each rare disease stakeholder.

  5. Respect the confidentiality of information shared within the RAM network (including but, not limited to, its members, applicants, constituents, donors, officers and affiliates). Conversations, discussions, documents, recordings, agreements, etc. that DO NOT qualify as public information, whether specifically marked as confidential or not, shall be treated as confidential information and is not to be distributed in any form and/or shared with any individual and/or organization outside of the RAM membership (i.e. members of the public) without the express written consent of the content creator and/or distributor. The term “public information” refers to information (professional and/or personal) in any form that is openly accessible to the public and of which anyone may access, share, and/or use without obtaining permission from the content creator and/or distributor.

  6. As a good faith effort, provide credible and effective oversight to professional objectives without injecting negative personal bias.

  7. Not accept commissions, gifts, payments, loans, promises of future benefits or other items of value on behalf of RAM, other than occasional gifts of nominal value that are in keeping with good business ethics. The acceptance of a complimentary pass and/or a travel stipend to attend any educational and/or networking events as a RAM member is an example of an “occasional gift of nominal value that are in keeping with good business ethics.”

  8. Act at all times in accordance with the highest professional standard(s) and always in the best interest of the rare disease community.

  9. Honor all commitments and promises to the best of own abilities. Shall own abilities be compromised and/or limited, all appropriate stakeholders involved, shall be notified, as soon as reasonably possible.

  10. Acknowledge contributions from all individuals and/or organizations who help to facilitate the execution of rare disease patient-focused projects and/or initiatives.

  11. Not knowingly and/or willingly participate in deceptive professional activities.

  12. Advocate for individual rare disease communities and the non-disease specific rare disease community.

  13. Not participate in or instigate any activity that may classify as gossip about specific individuals and/or a group of individuals and/or organizations. Gossip is defined as any conversation or report about another individual that involves details that are not confirmed as being true. Gossip may drain, corrupt, distract and/or down-shift the productivity, moral, and/or overall satisfaction of RAM designated (or associated RAM group) projects and/or initiatives. RAM members may share experiences with other individuals and/or organizations that have taken place in a professional setting and/or environment, with the strict understanding that there are no expectations for the individual and/or group to take any action as a result of learning of the described experiences(s).

  14. Act in good faith effectively removing any unprofessional opinion(s) and any self-serving biases when making decisions that may affect the RAM brand and/or any affiliated rare disease advocacy focused project(s) and/or initiative(s). Bias is defined as disproportionate weight in favor of or against an idea, thing, and/or individual, that is routed in prejudice, favoritism, and/or a distorted effort to maintain and/or enhance one’s self-esteem and/or self-perception.

  15. Be accountable for adhering to this Code of Conduct in its entirety.

  16. Do not hold an executive position within a prominent rare disease focused umbrella nonprofit rare disease organization (i.e. NORD, Global Genes, EveryLife Foundation, etc.) in an effort to maintain political neutrality within the rare disease nonprofit stakeholder landscape. An example of an executive position includes the position of Executive Director, CEO, President, etc. This clause shall not exclude non-executive positions within prominent rare disease focused umbrella organizations from membership. Additionally, no member of an executive team from any organization, including umbrella rare disease focused organizations, shall be disqualified from participating in a RAM Collaboration as a direct result of this clause.

  17. Automatically be resigned after not participating in three subsequent voting events presented to the membership for any reason. 

  18. If a RAM Member, be effectively resigned from membership after sending a resignation letter via email and/or publishing a resignation to the private communication server established exclusively for the RAM membership. If posted within the private communication server, the published resignation must be made by the individual seeking to effectively resign from the membership (a "Resignation Post"). If a Resignation Post is published, any RAM Member shall report the Resignation Post(s) to the RAM Admin team via email without violating the server's rules of confidentiality.

A. All members and affiliates shall:

B. Violations within Membership

  1. Any RAM member of whom is not in agreement with and/or violates this Code of Conduct, for any reason, shall resign, effective immediately, with the process facilitated by RAM Administration (“RAM Admin”) if necessary. RAM Admin responsible for managing and facilitating the maintenance of the RAM website and methods of communication (i.e. Zoom, Slack, email, social media, etc.) for the RAM network.

  2. Should a member in question of violating this Code of Conduct refuse to voluntarily resign, for any reason, the member shall be removed via a 50% majority vote in favor of removal amongst the current RAM membership.

a. Upon any member of RAM receiving credible information effectively proving that a member of RAM has violated or is in violation of this Code of Conduct, same credible information shall be submitted to RAM Admin for processing and shall be presented to the RAM membership in a professional unbiased manner.

b. Upon the receipt of satisfactory credible information, from RAM Admin, that a member of RAM has violated this Code of Conduct, any RAM member is entitled to request a group vote to remove the member in question from membership. Upon the request of at least one (1) RAM member, RAM Admin shall facilitate the voting process.

i. If 50% or more vote to remove the RAM member in question of violating this Code of Conduct, the individual shall resign effective immediately, facilitated by RAM Admin.

ii. If 51% or more vote not to remove the RAM member in question of violating this Code of Conduct, the RAM member shall remain a member of RAM, in good standing.

iii. Harassment of any individual for any reason, included but not limited to being accused of violating this Code of Conduct, shall not be tolerated within the RAM membership. Harassment shall be defined as a course of conduct which threatens, intimidates or puts a person in fear of their safety. Any individual that behaves in a manner effectively defined as harassment of another RAM member is in direct violation of this Code of Conduct.

C. Membership

  1. All individuals active in the rare disease patient advocacy community (whether disease specific or not) in a leadership and/or community-based patient advocacy position, seeking to join the RAM membership, shall apply for membership consideration via the online application form.

  2. All individuals who have successfully submitted an application form for RAM membership who cannot adhere to this Code of Conduct, for any reason, shall immediately request an adjournment of the application review process by emailing

  3. RAM Admin reserves the right to adjourn the application review process should the applicant not complete the application properly and/or should the applicant be irresponsive to follow-up communications necessary to proceed with the new applicant voting process.

  4. All individuals actively seeking to join the RAM membership must agree to comply with this Code of Conduct and the RAM Process Document (to be presented upon acceptance into the RAM membership) that has been established and adopted by the Rare Advocacy Movement.

  5. Any current member of RAM may choose to submit their resignation via email to for any reason, at any time and are not obligated in any way to share the reason for resigning.





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