• Alliance/Advocacy Organizations

• 145.

ARPKD/CHF Alliance

The ARPKD/CHF Alliance is only organization in the world solely committed to both Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis.

• Professional Societies & Associations

• 146.

Suneel Research Foundation

Our mission is to spread awareness about Duchenne Muscular Dystrophy (DMD), raise funds to support treatments and find a cure for DMD.

• Fund Raising and/or Fund Distribution

• 147.

Taylors Tale

Taylor's Tale is a public charity dedicated to the fight against CLN1 disease and other rare diseases.

• Public Health Programs

• 148.

United Pompe Foundation

SUPPORT RESEARCH FOR POMPE DISEASE AND HELP PATIENTS DEALING WITH POMPE DISEASE United Pompe Foundation The United Pompe Foundation was formed to assist patients andor their families with medical costs and other expenses that these patents and families face and may not be able to cover or fully cover through their insurance.

Ella Jewell Inc

Raise awareness in the area of Neutropenia and Funds to put towards research for Neutropenia and childhood bone marrow failure disorders; to one day find a cure and make a difference.

Cure LBSL

LBSL is a degenerative brain/spinal cord disease.

• Fund Raising and/or Fund Distribution

• 151.

Sdhb Coalition Inc

Our mission is to educate healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact in this orphan disease SEE SCHEDULE O ABOVE Vision Mission Our mission is to educate healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact in this orphan disease namely Pheochromocytoma and Paraganglioma.

• Health Support Services

• 152.

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.

• Alliance/Advocacy Organizations

• 153.

Marshalls Mountain Inc

Marshalls Mountain Pompe Disease Fundraising Marshalls Mountain was formed after our son was diagnosed with Pompe disease.