• Alliance/Advocacy Organizations

• 1.

PCD KS FOUNDATION

Working together to find a cure and improve care for those with ciliary disorders and their families by increasing awareness, research and support.

LEGACY OF ANGELS

The Mission of The Legacy of Angels Foundation, a 501 (c) (3) private giving family foundation established in 2008, is to improve the lives of children by working to promote the expansion of newborn screening, and to further education, awareness and research of Krabbe disease and Cystic Fibrosis to provide a better treatment and a cure.

• Fund Raising and/or Fund Distribution

• 3.

P4 Foundation Inc

A 501C3 nonprofit founded by: Gino Vizzi to educate, financially, spiritualy, and emotionally support kids and families with cancer while battling his own.

• Human Services - Multipurpose & Other N.E.C.

• 4.

JACKSON PROJECT

Non-Profit raising awareness about #Krabbe, supporting affected families and helping fund research.

• Kidney

• 5.

PKD Foundation

Dedicated to finding treatments and a cure for polycystic kidney disease (PKD).

• Health Support Services

• 6.

Pyruvate Kinase Deficiency Foundation

The Pyruvate Kinase Deficiency International Alliance is an international nonprofit organization whose mission is to enhance the quality of life for patients and their families by providing awareness, expanding education, and promoting advocacy.

• Cancer

• 7.

KrabbeConnect

KrabbeConnect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease.

• Epilepsy

• 8.

Kcna2 Epilepsy Inc

Join the KCNA2 Epilepsy Global Support Community on our quest for more information, research, treatments and a cure.

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.