Resources Results
Rare Disease Clinical Research Network
Phone: 1(888) 205-2311
Email: GARDinfo@nih.gov
Website: https://www.rarediseasesnetwork.org/resources-for-patients-and-families
DDX3X Foundation
Website: https://ddx3x.org/
Facebook: https://www.facebook.com/groups/geneddx3x/
MAGIC Foundation
4200 Cantera Dr. #106
Warrenville, IL 60555
Phone: (800) 362-4423
Email: contactus@magicfoundation.org
Website: https://www.magicfoundation.org/
Human Growth Foundation
997 Glen Cove Ave, Suite 5
Glen Head, NY 11545
Phone: (800) 451-6434
Email: hgf1@hgfound.org
Website: https://www.hgfound.org/
SMA Foundation
PO Box 9214
Jackson, WY 83002
Phone: (646) 253-7100
Email: info@smafoundation.org
Website: https://smafoundation.org/
Muscular Dystrophy Association
161 N. Clark, Suite 3550
Chicago, Illinois 60601
Phone: (800) 572-1717
Email: ResourceCenter@mdausa.org
Website: https://www.mda.org/
Global Genes
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone: 1(941) 248-7273
Email: careaboutrare@globalgenes.org
Website: https://globalgenes.org/
Never Give Up
27 W. Anapamu, Suite 177
Santa Barbara, CA 93101
Phone: (805) 203-0334
Email: info@nevergiveup.org
Website: https://nevergiveup.org/
EveryLife Foundation for Rare Diseases
1012 14th Street, NW, Suite 500
Washington, DC 20005
Phone: (202) 697-7273
Contact: Lindsey
Email: lcundiff@everylifefoundation.org
Website: https://everylifefoundation.org/
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
Phone: (800) 886-1762
Email: info@curesma.org
Website: https://www.curesma.org/
Together in SMA
The Bonnell Foundation
P. O. Box 1215
Royal Oak, Michigan 48068
Phone: 1(844) 297-8423
Email: info@thebonnellfoundation.org
Website: https://thebonnellfoundation.org/
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
Phone: (301) 951-4422
Toll Free: (800) 344-4823
Website: https://www.cff.org/
Everyday CF
Website: https://www.everyday-cf.com/
The Medical College of Wisconsin BPD Collaborative
Neonatology, MCW Dept. of Pediatrics
Children’s Corporate Center, Suite C410
999 N. 92nd St.
P.O. Box 1997
Milwaukee, WI 53226
Phone: (414) 266-6820
Website: https://www.mcw.edu/departments/pediatrics/divisions/neonatology
Lurie Children’s Hospital of Chicago BPD Collaborative
225 E. Chicago Ave.
Chicago, IL 60611
Phone: (312) 227-1400
Email: BPDprogram@luriechildrens.org
Website: https://www.luriechildrens.org/en/specialties-conditions/bronchopulmonary-dysplasia-program/
Penn State Health Children’s Hospital BPD Collaborative
600 University Drive
Hershey, PA 17033
Phone: (717) 531-6807
Website: https://www.pennstatehealth.org/childrens/services-treatments/pulmonary-cystic-fibrosis-program
Children’s Hospital of Orange County BPD Collaborative
1201 W. La Veta Ave.
Orange, CA 92868
Phone: (888) 770-2462
Website: https://www.choc.org/programs-services/pulmonology/chronic-lung-disease-of-infancy/
Children’s Hospital Los Angeles BPD Collaborative
4650 Sunset Blvd.
MS #83
Los Angeles, CA 90027
Phone: (323) 361-2287
Email: pulmonarycenter@chla.usc.edu
Website: https://www.chla.org/pulmonology-and-sleep-medicine
Phoenix Children’s Hospital BPD Collaborative
1919 E. Thomas Rd.
Phoenix, AZ 85016
Phone: (602) 933-1000
Website: https://www.phoenixchildrens.org/centers-programs/bronchopulmonary-dysplasia-bpd-program
Seattle Children’s Hospital
4800 Sand Point Way NE
Box 359300; MS OC.7.720
Seattle, WA 98105
Phone: (206) 987-2174
Website: https://www.peds.uw.edu/specialties/pulmonary-and-sleep-medicine
Stanford University BPD Collaborative
770 Welch Road
Palo Alto, CA, 94304
Phone: (844) 708-9728
Website: https://www.stanfordchildrens.org/en/service/bronchopulmonary-dysplasia
University of Arkansas for Medical Sciences BPD Collaborative
1 Children’s Way
Little Rock, AR 72202
Phone: (501) 263-2621
Website: https://pediatrics.uams.edu/specialties/neonatology/
UMASS Memorial Medical Center BDP Collaborative
Memorial Campus
119 Belmont Street
Worcester, MA 01605
Phone: (855) 862-7763
Website: https://www.ummhealth.org/umass-memorial-medical-center/services-treatments/childrens-medical-center/z-list-pediatric-services/pediatric-lung-disorders
Rare Disease Clinical Research Network
Phone: 1(888) 205-2311
Email: GARDinfo@nih.gov
Website: https://www.rarediseasesnetwork.org/resources-for-patients-and-families
DDX3X Foundation
Website: https://ddx3x.org/
Facebook: https://www.facebook.com/groups/geneddx3x/
MAGIC Foundation
4200 Cantera Dr. #106
Warrenville, IL 60555
Phone: (800) 362-4423
Email: contactus@magicfoundation.org
Website: https://www.magicfoundation.org/
Human Growth Foundation
997 Glen Cove Ave, Suite 5
Glen Head, NY 11545
Phone: (800) 451-6434
Email: hgf1@hgfound.org
Website: https://www.hgfound.org/
SMA Foundation
PO Box 9214
Jackson, WY 83002
Phone: (646) 253-7100
Email: info@smafoundation.org
Website: https://smafoundation.org/
Muscular Dystrophy Association
161 N. Clark, Suite 3550
Chicago, Illinois 60601
Phone: (800) 572-1717
Email: ResourceCenter@mdausa.org
Website: https://www.mda.org/
Global Genes
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone: 1(941) 248-7273
Email: careaboutrare@globalgenes.org
Website: https://globalgenes.org/
Never Give Up
27 W. Anapamu, Suite 177
Santa Barbara, CA 93101
Phone: (805) 203-0334
Email: info@nevergiveup.org
Website: https://nevergiveup.org/
EveryLife Foundation for Rare Diseases
1012 14th Street, NW, Suite 500
Washington, DC 20005
Phone: (202) 697-7273
Contact: Lindsey
Email: lcundiff@everylifefoundation.org
Website: https://everylifefoundation.org/
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
Phone: (800) 886-1762
Email: info@curesma.org
Website: https://www.curesma.org/
Together in SMA
The Bonnell Foundation
P. O. Box 1215
Royal Oak, Michigan 48068
Phone: 1(844) 297-8423
Email: info@thebonnellfoundation.org
Website: https://thebonnellfoundation.org/
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
Phone: (301) 951-4422
Toll Free: (800) 344-4823
Website: https://www.cff.org/
Everyday CF
Website: https://www.everyday-cf.com/
The Medical College of Wisconsin BPD Collaborative
Neonatology, MCW Dept. of Pediatrics
Children’s Corporate Center, Suite C410
999 N. 92nd St.
P.O. Box 1997
Milwaukee, WI 53226
Phone: (414) 266-6820
Website: https://www.mcw.edu/departments/pediatrics/divisions/neonatology
Lurie Children’s Hospital of Chicago BPD Collaborative
225 E. Chicago Ave.
Chicago, IL 60611
Phone: (312) 227-1400
Email: BPDprogram@luriechildrens.org
Website: https://www.luriechildrens.org/en/specialties-conditions/bronchopulmonary-dysplasia-program/
Penn State Health Children’s Hospital BPD Collaborative
600 University Drive
Hershey, PA 17033
Phone: (717) 531-6807
Website: https://www.pennstatehealth.org/childrens/services-treatments/pulmonary-cystic-fibrosis-program
Children’s Hospital of Orange County BPD Collaborative
1201 W. La Veta Ave.
Orange, CA 92868
Phone: (888) 770-2462
Website: https://www.choc.org/programs-services/pulmonology/chronic-lung-disease-of-infancy/
Children’s Hospital Los Angeles BPD Collaborative
4650 Sunset Blvd.
MS #83
Los Angeles, CA 90027
Phone: (323) 361-2287
Email: pulmonarycenter@chla.usc.edu
Website: https://www.chla.org/pulmonology-and-sleep-medicine
Phoenix Children’s Hospital BPD Collaborative
1919 E. Thomas Rd.
Phoenix, AZ 85016
Phone: (602) 933-1000
Website: https://www.phoenixchildrens.org/centers-programs/bronchopulmonary-dysplasia-bpd-program
Seattle Children’s Hospital
4800 Sand Point Way NE
Box 359300; MS OC.7.720
Seattle, WA 98105
Phone: (206) 987-2174
Website: https://www.peds.uw.edu/specialties/pulmonary-and-sleep-medicine
Stanford University BPD Collaborative
770 Welch Road
Palo Alto, CA, 94304
Phone: (844) 708-9728
Website: https://www.stanfordchildrens.org/en/service/bronchopulmonary-dysplasia
University of Arkansas for Medical Sciences BPD Collaborative
1 Children’s Way
Little Rock, AR 72202
Phone: (501) 263-2621
Website: https://pediatrics.uams.edu/specialties/neonatology/
UMASS Memorial Medical Center BDP Collaborative
Memorial Campus
119 Belmont Street
Worcester, MA 01605
Phone: (855) 862-7763
Website: https://www.ummhealth.org/umass-memorial-medical-center/services-treatments/childrens-medical-center/z-list-pediatric-services/pediatric-lung-disorders