Connect Families and Professionals

  • Provide opportunities for support and personal contact for those with MSUD, their families, and professionals.
  • Sponsor the biennial MSUD Family Group symposium that is attended by MSUD families, clinicians, researchers, MSUD formula manufacturers, and other professionals.
  • Maintain the MSUD Support Group Facebook designed to connect families and professionals on a national and international level.
  • Produce two newsletters each year–one of which is mailed to each recipient and both of which are available on-line. 
  • As needed, expand the resources to Spanish speaking families and enhance our Spanish contacts.
  • Update the listings of hospitals, metabolic clinics, and medical centers. Include as appropriate the listings of the National PKU Alliance website.
  • Encourage hospitals, clinics, and medical centers to provide the family support group web address and Facebook pages to families with a new born MSUD child.