Important Contact Information

If you find yourself at the hospital with a medical emergency, be sure to be involved in the plan of care. In addition to sharing your PPMD emergency card or PPMD app with clinicians involved in your care, it is also important to make sure a physician with experience in Duchenne is involved in you or your child’s care in the hospital. We have compiled a list of contact numbers from each of the PPMD Certified Duchenne Care Centers (CDCCs) below to ensure a Duchenne specialist can be involved in your child’s plan of care, and make sure this happens:

  1. Call your neuromuscular team/center.
  2. Call the hospital where you receive neuromuscular care if it is after hours.
  3. Physician to physician calls.

If you have questions about planning ahead in case of emergencies, please don’t hesitate to email kathi@parentprojectmd.org or amanda@parentprojectmd.org.

1) Call your neuromuscular team/center

It is extremely important to notify your neuromuscular care team if you are in the hospital with an illness or injury. This is especially important if you are being seen at hospital that is not affiliated with your neuromuscular care. It is always important to notify your care team so they can work with the clinicians taking care of you or your child to ensure you receive the best care possible. Do not depend on the hospital staff to communicate with your neuromuscular care team; it is always best to personally confirm your neuromuscular care team is involved.

INSTITUTIONNM CLINIC # 
Cincinnati Children's Hospital Medical Center513-803-3000, option 2
Ann and Robert H. Lurie Children's Hospital of Chicago312-227-3550
Children's Hospital Colorado720-777-2806
Children's Hospital of Los Angeles323-361-5919
Children's Hospital of the King's Daughters757-668-7732
Children's Hospital of Wisconsin414-266-3464
Children's Mercy Hospital816-302-3970
Children's National Health System202-476-6193
Duke Children's Hospital919-613-6832
Gillette Children's Specialty Healthcare651-726-2665
Kennedy Krieger Institute, Inc.443-923-9525
Lucile Packard Children's Hospital at Stanford650-497-5934
Massachusetts General Hospital617-643-4645, option 1
Nationwide Children's Hospital614-722-2203
Nemours/Alfred I. duPont Hospital for Children302-651-5930
Seattle Children's Hospital206-987-2114, option 4
The University of Rochester Medical Center585-275-2559
UC Davis916-734-7041
UCLA310-405-9824
UCSF Benioff Children's Hospital415-514-8848
University of Iowa Hospitals and Clinics319-353-6200
University of Utah801-213-3599
University of Virginia Children's Hospital434-924-0123
UW Health American Family Children's Hospital608-263-6420
Yale203-688-4221

2) Call the hospital where you receive neuromuscular care if it is after hours

We all know emergencies can happen in the middle of the night or on a weekend when it may be more difficult to contact your neuromuscular center. It is best to discuss an emergency plan with your neuromuscular specialist and ask for a number to call outside of regular office hours. If you do not have a direct number to a specialist on call, your next option is to call the main hospital’s operator and ask for the neurologist on call. From here, they should be able to connect you with the appropriate specialist and help drive your care.

INSTITUTIONHOSPITAL OPERATOR #
Cincinnati Children's Hospital Medical Center513-636-4200
Ann and Robert H. Lurie Children's Hospital of Chicago312-227-4000
Children's Hospital Colorado720-777-1234
Children's Hospital of Los Angeles323-660-2450
Children's Hospital of the King's Daughters757-668-7000
Children's Hospital of Wisconsin414-266-2000
Children's Mercy Hospital816-234-3000
Children's National Health System202-476-5000
Duke Children's Hospital919-684-8111
Gillette Children's Specialty Healthcare651-229-3890
Kennedy Krieger Institute, Inc.443-923-9200
Lucile Packard Children's Hospital at Stanford650-497-8000
Massachusetts General Hospital617-726-2000
Nationwide Children's Hospital614-722-2000
Nemours/Alfred I. duPont Hospital for Children302-651-4000
Seattle Children's Hospital206-987-2000
The University of Rochester Medical Center585-275-2100
UC Davis800-282-3284
UCLA310-825-6301
UCSF Benioff Children's Hospital415-476-1000
University of Iowa Hospitals and Clinics319-356-1616
University of Utah801-662-1000
University of Virginia Children's Hospital434-924-0000
UW Health American Family Children's Hospital608-263-6400
Yale203-688-9907

3) Physician to physician calls

You have the right to ask for a second opinion. It can be intimidating to question a physician about their plan of care. However, they may not be treating you or your child in a way that is appropriate or safe for someone living with Duchenne. Ask the physician taking care of you or your child to connect with your neuromuscular team (if you are cared for at a CDCC) or a specialist from one of the CDCCs (if you are not seen at one of these locations) to discuss yours or your child’s case. Each CDCC is located at a hospital that has a physician consult line, which you can give to the doctor taking care of you or your child.

INSTITUTIONPHYSICIAN CONSULT #
Cincinnati Children's Hospital Medical Center513-636-7997
Ann and Robert H. Lurie Children's Hospital of Chicago312-227-4000
Children's Hospital Colorado720-777-3999
Children's Hospital of Los Angeles323-361-2471
Children's Hospital of the King's Daughters757-668-9999
Children's Hospital of Wisconsin414-266-2460
Children's Mercy Hospital1-800-466-3729
Children's National Health System202-476-2120
Duke Children's Hospital919-416-3853
Gillette Children's Specialty Healthcare651-325-2200
Kennedy Krieger Institute, Inc.443-923-9403
Lucile Packard Children's Hospital at Stanford800-995-5724
Massachusetts General Hospital888-644-3211
Nationwide Children's Hospital614-355-0221
Nemours/Alfred I. duPont Hospital for Children302-651-4000
Seattle Children's Hospital206-987-7777, option 4
The University of Rochester Medical Center888-661-6162
UC Davis800-482-3284, option 2
UCLA
UCSF Benioff Children's Hospital877-822-4453
University of Iowa Hospitals and Clinics319-384-8008
University of Utah801-213-7759
University of Virginia Children's Hospital800-552-3723
UW Health American Family Children's Hospital608-263-3260
Yale888-964-4233