Cystic Fibrosis Foundation

Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.

• Alliance/Advocacy Organizations

• 146.

Hht Foundation International Inc

Cure HHT is the only organization in the US advocating for research, education and a cure for Hereditary Hemorrhagic Telangiectasia, Osler-Weber-Rendu Syndrome The official Facebook page for Cure HHT, the world's leading organization working to raise awareness The mission of the HHT Foundation International is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

• Fund Raising and/or Fund Distribution

• 147.

Renu Syndrome United

ReNU Syndrome Variants in RNU42 Uncovered as One of the Most Prevalent Causes of Neurodevelopmental Disorders Discovery Renews Hope for Affected Families Worldwide Characteristics may include Developmental Motor and Intellectual Delays Absent or Delayed Speech and Language Seizures Brain Abnormalities Small Head Size Distinct Facial Features Low Muscle Tone and Drooling Autism Spectrum Disorder Short Stature BoneSkeletal Anomalies Vision Issues and more More Information Big thanks to the researchers clinicians geneticists in these articlesfor this longawaited revelation.

Neurofibromatosis Midwest

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on th NF Midwest is committed to improving the lives of children, adults, and families impacted by neurofibromatosis in our region which includes Illinois, Indiana, Iowa, Kentucky, Wisconsin, and the eastern half of Missouri.

The RYR-1 Foundation

This organization is to raise awareness, educate, provide support, and raise funds for research.

• Fund Raising and/or Fund Distribution

• 150.

Seventeen 22 Foundation

Nonprofit focused on providing financial assistance for neurofibromatosis families.

• Patient Services�Entertainment, Recreation

• 151.

Northwest Pandas Pans Network

Serving Pacific Northwest children diagnosed with PANDAS/PANS/AE and their families.

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.

THE GUARDIAN BRAIN FOUNDATION

The Guardian Brain Foundation was created in Loving memory of my brother Dennis who was succomed by a cancerious brain tumor, and my father from CJD.