NEW ENGLAND CONNECTION FOR PKU AND ALLIED DISORDERS INC

Volunteer, nonprofit, striving to be a supportive resource for New England area families and friends affected by inborn errors of metabolism, such as PKU.

• Private Operating Foundations

• 74.

CERN Foundation (Collaborative Ependymoma Research Network)

Committed to improving the care and outcome of people with ependymoma through community support and research efforts.

Coming Together For A Cure, Inc

A 501c3 nonprofit dedicated to advancing stem cell therapy for Duchenne MD and other rare diseases.

• Specifically Named Diseases

• 76.

SETBP1 Society

President of SETBP1 Society and Parent Advocate for SETBP1-HD SETPB1 Society's mission is to provide support to individuals with SETBP1 haploinsufficiency disorde Our Mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

Astro Kidz, Inc.

Our mission is to empower families with the tools and knowledge to help their children to thrive and reach for the stars by providing education, social groups, and networking.

• Specifically Named Diseases

• 78.

Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop

We are dedicated to amplifying patient voices, and one day meeting the first survivor of ALSP.

• Birth Defects, Genetic Diseases

• 79.

EBF3 HADDS Foundation

EBF3 HADDS FOUNDATION Home SupportDonate About Events Blog Shop More ARTICLES EVENTS BLOG CONNECT Learn more about what is happening globally with our community.

THE EPILEPSY FOUNDATION OF NORTHWESTERN

Mission of the Epilepsy Center of Northwest Ohio is to improve the lives of people affected by epilepsy and those with developmental disabilities The Mission of the Epilepsy Center of Northwest Ohio is to improve the lives of people affected by epilepsy and those with developmental disabilities.

• Birth Defects, Genetic Diseases

• 81.

OUR PROMISE TO NICHOLAS FOUNDATION

Established in 2009 as a nonprofit charitable foundation, Our Promise to Nicholas (OPTN) was founded by Chris and Heather Dainiak of Bedford, New Hampshire Working together to understand and cure Batten Disease HOW CAN YOU HELP 1 2 3 HOW CAN YOU HELP Make A Donation Come To Events How To Volunteer Welcome to Our Promise to Nicholas Foundation.