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ASXL Rare Research Endowment Foundation
The ASXL Rare Research Endowment (ARRE) Foundation is a family-led organization supporting research for rare genetic conditions affecting the ASXL genes, including Bohring-Opitz Syndrome, Shashi-Pena Syndrome and Bainbridge-Ropers Syndrome.

Salem Oaks, LLC
Committed to working with patients, their advocates, biopharmaceutical companies, regulators and other stakeholders to develop educational tools that help patients bridge the gap between themselves and Biopharma research ad development.

TREND Community
TREND Community is an invitation-only network of consented patients and caregivers living with rare disease who are engaged in community powered science.

The Charlotte & Gwenyth Gray Foundation
The Charlotte & Gwenyth Gray Foundation to cure Batten Disease was founded to raise the estimated 10 million dollars necessary to fund the urgent medical research to save the lives of all children devestated by Batten Disease. 

Boston Biotech Clinical Research
Boston Biotech offers strategic consultation to provide your CRO with a detailed clinical trial planand FDA strategy to ensure speed to market and reduce costs.

Barb's Beads
I started making Pulmonary Hypertension Awareness bracelets for myself but after posting a picture of it on one of the PH Facebook pages, others asked to buy them.

International Pemphigus & Pemphigoid Foundation
The IPPF seeks to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

CADASIL Association, Inc.
The mission of the non-profit CADASIL Association is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed.

Project Alive
Project Alive is the world's leading 501(c)(3) Hunter Syndrome research and advocacy foundation. Project Alive raises awareness of Hunter Syndrome globally, funds curative research, and advocates for patients and families affected by Hunter Syndrome.

Batten Disease Support and Research Association
501c3 organization dedicated to supporting families with children affected with Batten Disease, a fatal childhood disorder. The BDSRA also funds research searching for a cure for this degenerative disease.

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