Make a Difference
The KBG Syndrome Association is a donor-driven non-profit organization, and every dollar makes a meaningful impact on the lives of families affected by KBG syndrome.
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We are deeply grateful for the generosity of our community, whose support allows us to fund research, provide essential resources, offer family support, host conferences, organize regional events and so much more.
Privacy Statement
The KBG Syndrome Association values donor trust and is committed to maintaining the highest standards of privacy and data protection.
Donor information is used exclusively for internal purposes including donation processing, receipts, recordkeeping, and communication about organizational programs and impact.
We do not sell, exchange, or otherwise distribute donor information to external organizations. Reasonable administrative, technical, and physical safeguards are in place to protect donor data. Donors may choose anonymity and may opt out of communications at any time.
Responsible Stewardship
The KBG Syndrome Association is a nonprofit organization committed to responsible stewardship and transparency.
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Donations are used to support our mission of advancing research, providing family resources, strengthening community programs, and raising awareness for individuals affected by KBG syndrome.
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We maintain financial oversight and governance to ensure funds are used effectively and in accordance with applicable nonprofit regulations.
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The KBG Syndrome Association is a nonprofit tax-exempt charitable organization (tax ID number 41-3653158) under Section 501(c)(3) of the Internal Revenue Code. Donations are tax deductible as allowed by law.
This page is like a lifeline for the KBG community. It's full of support, understanding, and friendship. Everyone here cheers each other on, celebrating our loved ones with KBG and those who care for them. They're always finding ways to spread awareness about our community's challenges and victories. You never feel alone in your struggles here. They're all about making connections, both near and far, and providing up-to-date, factual information to help those who feel lost find a home to learn and discover more about this rare thing called KBG.
The KBG Syndrome Association has been an incredible gift to our family. It was among the first resources we sought out after receiving the KBG diagnosis. Being affected by such a rare condition can make the world feel incredibly lonely. However, thanks to the KBG Syndrome Association, we have discovered a community that has welcomed both us as parents and my daughter, providing us with opportunities to make friends. We are the only family in our area known to have KBG, making the Family Weekend a few weeks ago an extraordinary chance for us to connect with others who live similar lives and face the same challenges. The KBG Syndrome Association offers numerous resources, including business cards to distribute and Facebook pictures of our children for Rare Disease Day. We feel immensely fortunate to have the support of the KBG Syndrome Association. Thank you for all your time and effort in improving the lives of everyone affected.
-M.Morton