Frequently Asked Questions (FAQs)

What is the MED12 Foundation?

The MED12 Foundation Inc. is currently within its US nonprofit 501c3 startup phase as a Patient Advocacy Group (PAG) for diseases related to the MED12 gene. By creating a nonprofit, individuals and families affected by rare diseases related to MED12 can collaborate towards advancing research. We are stronger together. 

Why form the US nonprofit?

As a legal business entity in the US, the nonprofit will allow us to register as an advocacy group with other organizations in the rare disease space to access resources that are not directly accessible as individuals. By building our network with other rare disease organizations, researchers, clinicians etc. we can advance knowledge and progress for those affected by a MED12 related disease. 

How can I help?

If interested in volunteering, please submit the Volunteer Interest Form. It will take a village, all help is welcome. :)

How can I donate?

Not available just yet. Will update when available. Process to submit as tax exempt as a 501c3 charitable organization takes several months to process with the US IRS. In the mean time, please consider volunteering your time above!

Myself or a Family Member has been newly diagnosed, where do I go for help?

Please send an email to info@med12.org with your questions. As we continue to grow, will be posting more information to this site and social media once established. In the meantime, consider joining the Simons Searchlight MED12 Facebook Group or the MED12 Variant Related Syndromes Facebook Group