• Diseases, Disorders, Medical Disciplines N.E.C.

• 1.

U R Our Hope

Non-profit serving individuals with undiagnosed & rare disorders through education, advocacy, and support in order to bring hope through knowledge, empowerment Assisting those with undiagnosed or rare disorders at any age and any stage.

• Epilepsy

• 2.

Where Theres A Will Theres A Cure

We are going to cure X-Linked Myotubular Myopathy.

Hope4Harper

Hope4Harper is a grassroots organization designed to provide hope to those living with CDKL5 deficiency and other seizure disorders by fostering awareness and supporting research.

• Fund Raising and/or Fund Distribution

• 4.

Eleanor Kaplan Foundation Inc

To raise funds and awareness to develop cures for Ultra Rare Neurodegenerative Diseases.

• Birth Defects, Genetic Diseases

• 5.

SHINE Syndrome Foundation Inc

DLG4-related Synaptopathy / SHINE Syndrome *Managed by the board of the DLG4 SHINE Foundation A page for people interested in learning more about DLG4-related Synaptopathy / SHINE Syndrome *Managed by the board of the DLG4 SHINE Foundation Our mission is to improve the quality of life for children and families impacted by DLG4 SHINE through supporting collaborative research among international medical professionals, nurturing a family community, and raising worldwide awareness.

Dlg4 Research Fund

DLG4-related Synaptopathy / SHINE Syndrome *Managed by the board of the DLG4 SHINE Foundation A page for people interested in learning more about DLG4-related Synaptopathy / SHINE Syndrome *Managed by the board of the DLG4 SHINE Foundation Mission To find specific treatment options and a cure for DLG4 patients by building a collaborative network of patients, families, clinicians and scientists that will work together to raise awareness and accelerate the understanding, diagnosis and treatment of DLG4 related synaptopathy.

• Fund Raising and/or Fund Distribution

• 7.

Believe in A Cure, Inc.

Believe in a Cure, Inc. is a 501(c)(3) tax-exempt organization whose mission is to: (1) support the care and treatment of individuals diagnosed with FOXG1 Syndrome and similar disorders, as well as to raise public awareness regarding such issues; and (2) support research and development of learnings and methods to improve the qualify of life for patients with such disorders.

• Birth Defects, Genetic Diseases Research

• 8.

Channeling Hope Foundation

Channeling Hope Foundation A community of researchers and families driven to advance care and develop treatments for those affected by NALCNrelated disorders.

• Specifically Named Diseases

• 9.

The Kennedy Ladd Foundation, Inc.

The Kennedy Ladd Foundation is committed to ending the suffering caused by MPS1, a progressive and life-threatening disease.