This organization, not to be confused with the New England Connection for PKU and Allied Disorders Inc. in Massachusetts, is becoming very active and influential. Included with this issue is a registration form for their first big Metabolic Conference to be held in Dublin, Ohio. The agenda is on the back page of this issue.
The National Coalition for PKU and Allied Disorders Conference is planned for families and professionals from seven different groups: MSUD, PKU, the organic acidemias, glutaric aciduria, tryosinemia, homocystinuria, and the fatty oxidation disorders. During the day on Friday, each group will have its own speakers and agenda. On Friday evening, there will be a Newborn Screening meeting open to anyone interested in that topic. There is no cost to those who attend only Friday evening.
On Saturday, the topics will be of general interest to all attendees. On Thursday and Saturday evenings there will be receptions at the hotel with cheese and crackers, fruit, and a cash bar for those who want to attend. Be sure to make reservations soon at the Dublin Embassy Suites Hotel. The toll free number is 1-800-362-2779 or call the hotel directly at 614-790-9000.
Be sure to state that you are attending the National Coalition for PKU and Allied Disorders Conference in order to get your $99 room rate. You will have a choice of 2 double beds or 1 king size bed. Each room has a pull-out couch, microwave, refrigerator, coffee maker, blow dryer, etc. This price includes a continental breakfast and an early evening snack and soft drink. There is a $50 registration fee which includes lunch both days.
There is an indoor pool, whirlpool, and small exercise room. They ask that children with MSUD under 12 not attend the conference as there is no program or daycare planned for them. For more information on this event or organization, check out their web site: pku-allieddisorders.org