Events and confererences for patients and families affected by metabolic disorders, and for health care professionals in the fields of medicine and genetics —
You’re Invited! – Join us for an Interactive PKU Cooking Class!
Kathy Cody, Registered dietician and PKU Account Manager at BioMarin, is hosting this fun & informative class:
WHAT: Join Chef Sara Sullivan for a day of hands-on cooking the low-protein way! You will take away useful cooking and nutritional tips, as well as a variety of easy and delicious recipes for all members of the family to enjoy. At the end of the event, enjoy the recipes prepared that day!
Hear Ashley Vollenweider, MSN, CPNP, of University of Utah, speak about “PKU: An Overview.”
WHEN: Sunday, May 22, 2016
10AM – 2PM
Low-Phe meal will be provided
WHERE: The Essex, Vermont’s Culinary Resort & Spa
70 Essex Way
Essex, VT 05452
COST: This special free event is designed for people with PKU and their families. It’s sponsored by BioMarin Pharmaceutical Inc.
REGISTRATION: Register Now – Space is limited!
To reserve your space call 855-PKU-CALL (855-758-2255) or visit http://www.pkuevent.com/der/
Limit of three family members or friends per each person with PKU. Childcare will be provided.
Family Day of Winter Fun
Families affected by PKU and allied disorders, and their extended family and friends, are invited to this fun winter outing. The event is hosted annually by our friends at the New England Connection for PKU and Allied Disorders (NECPAD).
Face Forward Conference
This conference, produced by Next Step, provides teens and young adults living with metabolic/genetic conditions an opportunity to come together for four days of fun and adventure. Details are here.
An exciting, three-day, summer event designed especially for teenagers (ages 13-18 years) with PKU or other metabolic conditions. The program is offered through the Metabolism program at Boston Children’s Hospital, and is designed to help teens build a supportive social network, try new and challenging activities, build resiliency and self-confidence, and build skills for independent health managment.
PKU Camp at Burgess & Hayward
Since 1997 Camp Burgess & Hayward in Sandwich, MA, has teamed with Boston Children’s Hospital to offer a coed week of PKU Camp in August. Children with PKU join campers with and without PKU for a totally integrated week of overnight summer camp.
Annual Meeting of the New England Consortium of Metabolic Programs
Held annually at the Tower Hill Botanic Garden in Boylston, MA. The meeting is open to Consortium members. The purpose of the New England Consortium of Metabolic Programs is to increase knowledge of metabolic disorders and to improve the delivery of health care to patients in our region. The Consortium provides a forum for discussions and the possibility for joint projects to carry out our goals.
Members of the New England Consortium of Metabolic Programs organize family weekends throughout the New England area for kids and teens with metabolic disorders, and for their families. These weekend events are a chance for patients and families to get together together socially, to have fun, do self-esteem-building activities, and to share information and support.