The name of the organization is Disease InfoSearch. It is not only a resource for credible information but guides patients and families to valuable
The Orphan Disease Center’s JumpStart program serves to establish and progress research agendas in emerging and neglected rare diseases. The JumpStart program partners with patient groups and families to address gaps by identifying key opinion leaders and introducing new researchers to a disease. The program can help facilitate the development of animal models, establish a patient alliance or a patient registry, and organize symposia. Due to limited resources, ODC is unable to provide financial support. JumpStart primarily offers scientific advisement and network outreach.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Rare Disease
Accessing treatments can be difficult, especially if one is impacted by a rare disease. In fact, only 5% of rare diseases have an FDA-approved treatment.
NYUAD Researchers Identify the Code That Regulates Liver Regrowth: A New Form of Regenerative Medicine May Follow
Researchers at NYU Abu Dhabi (NYUAD) have discovered the code that is associated with the liver’s genome (complete set of DNA) and its ability
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we
ANGEL AID CARES began as the brainchild of Cristol Barrett O’Loughlin, out of a shared desire to pay tribute to her own family experience and
The answer lies in the loss of endoplasmic reticulum (ER) calcium and protein which leads to cardiovascular, musculoskeletal, viral, and neurodegenerative diseases. ER performs