About Us

Vision, Mission, Purpose

Next Generation of Cystinosis is a non-profit volunteer-run organization founded in 2019. Our vision is to be an organization run by and for adults 18 years and older affected by cystinosis. Our mission is to have open and honest dialogue about the plethora of issues that affect them.

The following highlight key elements of our organization’s purpose:

  • To provide adults 18 years and older affected by cystinosis support in dealing with the issues and concerns that specifically affect them;
  • To provide emotional and psychological support and education;
  • To provide evidence-based, medically accurate sexual and reproductive health education; and
  • To provide guidance on where to find information and resources.

Nondiscrimination and Nonharassment Policy

It is our policy to provide programs, education, and advocacy without discrimination against or harassment of, any person on the basis of age, ancestry, color, creed, national origin, race, religion, marital status, sex, sexual orientation, gender, gender expression, gender identity, physical attributes, physical or mental ability or disability, political party preference, political belief, socioeconomic status, and familial status.

Any such discrimination or harassment is prohibited and will not be tolerated. Violation of this policy shall be grounds for immediate expulsion from the organization.

Safe Space Declaration Rules and Procedures

A Safe Space is a place where everyone can relax and be fully self-expressed, without fear of being made to feel uncomfortable, unwelcome, or unsafe on account of age, ancestry, color, creed, national origin, race, religion, marital status, sex, sexual orientation, gender, gender expression, gender identity, physical attributes, physical or mental ability or disability, political party preference, political belief, socioeconomic status, and familial status.

  • A Safe Space is a place where the rules guard each person’s self-respect and dignity and strongly encourages everyone to respect others.
  • A Safe Space includes always using constructive criticism:
    • Criticism or advice that is useful and intended to help or improve something, often with an offer of a possible solution;
    • The process of offering valid and well-reasoned opinions about the work of others, usually involving both positive and negative comments, in a friendly manner rather than an oppositional one.
  • A Safe Space also includes a zero-tolerance for hate language.
  • A Safe Space empowers and holds each person accountable.
    • If a person uses hurtful language, the person’s responsibility is to:
      • Acknowledge when it happens.
      • Apologize for it.
      • Make a strong effort to monitor yourself and not do it again.
    • If language is hurtful to a person, that person’s responsibility is to:
      • Speak up.
      • Voice your concerns.
      • Make sure the group is aware.
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