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Meeting and Community Guidelines

Shwachman-Diamond Syndrome Alliance MEETING AND COMMUNITY GUIDELINES

Last Revised: May 2023

Thank you for your interest in supporting the mission of the Shwachman-Diamond Syndrome Alliance, Inc., a 501(c)(3) nonprofit organization dedicated to driving research for therapies and cures for Shwachman-Diamond Syndrome (SDS). Our work critically depends on the participation of people and families like you, and we are grateful to have you as part of our community. These policies apply to your participation in meetings, events, and programs conducted by the Shwachman-Diamond Syndrome Alliance (“SDS Alliance,” “SDSA” “we,” “us” or “our“) directly or through a third party, or via fundraisers & events run by third parties. 

Community Participation Guidelines


We host and participate in many different communities in service of our mission to build a world where SDS is curable. Within these communities, we are committed to supporting an environment where everyone is welcome, and communication is direct, kind, and honest. Our employees, community members, partners, and vendors should have an opportunity to participate, contribute, and be heard and valued for their unique skills, perspectives, and experiences.

Our Guidelines are expected behaviors for engaging in our communities, and reflect our organizational values and DEI principles, including a commitment to fostering truly inclusive work. We hold ourselves accountable to these guidelines and expect all who participate  – including internal meetings, external convenings, workshops, online discussions, and other forums – to do the same.


Our Behavior


Be Direct and Kind – We speak directly and honestly, including when we disagree or want to offer feedback. We are kind, thoughtful, and constructive in our interactions.

Practice Inclusion – We intentionally seek a diversity of backgrounds, experiences, and viewpoints and elevate the different identities at the table. Each of us recognizes our power and confronts our own biases so that others can be fully present.

Make Space – We make space for everyone to contribute. If we find ourselves dominating a discussion, we step back and encourage other voices to join in. We pay attention and listen carefully.

Take Accountability – We hold ourselves accountable, and even if well-intentioned, take responsibility for our impact. If we harm someone through our words or actions, we apologize sincerely and correct our behavior.

Bring Solutions – When we identify a problem, conflict, or gap, we raise it and work to build solutions through authentic engagement, dialogue, and curiosity.


Behavior That Will Not Be Tolerated


Personal Attacks – Conflicts will inevitably arise, but frustration should never turn into a personal attack. It is not okay to insult, demean, or belittle others. This includes sustained “talking over” or “heckling” of speakers.

Derogatory Language – Hurtful or harmful language or actions, or vulgar, discriminating, intimidating, threatening, or harassing behavior is not acceptable. If you’re unsure if a word is derogatory, don’t use it. 

Sexual Attention or Unwelcome Physical Contact – Sexual attention or unwelcome physical contact is not acceptable. This includes sexualized comments, jokes, or imagery in interactions, communications, or written materials, as well as inappropriate touching or sexual advances.

Breach of Confidentiality – Trust is at the core of our ability to collaborate and to advance our work. If unsure whether you can access, use, disclose, or share information, the expectation is that you ask before disclosing or using. This is especially true for patient and health-related information.

Violence, Threats of Violence – Violence and threats of violence are not acceptable – online or offline. This includes incitement of violence toward any individual, including encouraging a person to commit self-harm.

Intoxication – Drinking alcohol in excess or misuse of prescription drugs (or use of illegal drugs) while working or participating in our communities, or pushing others to do so, or making derogatory comments about those who abstain from alcohol or other substances, is not acceptable.


Consequences of Unacceptable Behavior


Inappropriate behavior will not be tolerated and can result in you being asked to leave an event, meeting, or online space, either temporarily or for the duration of the event, or be banned from future events and activities.


For non-SDS Alliance employees, inappropriate behavior may be reported to your organization. For SDS Alliance employees, violation may lead to disciplinary action, up to and including termination of employment.




Your notification of any concerns is essential to us. We cannot help resolve a problem unless we know about it. Bring any concerns to our attention as soon as possible so that we can take necessary steps to address the situation. We will not tolerate intimidation or retaliation against any individual who raises a concern in good faith under this policy. 

These Guidelines are inspired by and adapted from the Chan Zuckerberg Initiative.


If you have any questions about these policies and guidelines, please contact us at

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