“I Am More Than the Person in the Bed” – Kristian’s Message to the World
Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it.
JumpStart
JumpStart
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:
- Emerging and neglected rare diseases
Resources & Support
Patient Worthy Posts on Rare Disease
What Happens When a Patient Is Living with Multiple Rare Diseases?
I have battled several autoimmune and neurological conditions that are triggered by food and other factors for over 50 years. It took most of my
CRISPR Therapeutics Shares Promising Updates on Zugo-cel in Autoimmune and Oncology Trials
CRISPR Therapeutics has announced encouraging early results for zugocaptagene geleucel (zugo-cel), its investigational allogeneic CAR T therapy targeting CD19, in both autoimmune diseases and hematologic
FDA Approves Amneal’s Denosumab Biosimilars Boncresa and Oziltus
As reported on PharmaBiz, Amneal Pharmaceuticals, in collaboration with mAbxience, has received U.S. Food and Drug Administration (FDA) approval for two denosumab biosimilars: Boncresa (referencing
Chiesi Group Partners with Aliada Therapeutics to Advance Blood-Brain Barrier Technology for Rare Diseases
Chiesi Group has entered an exclusive licensing agreement with Aliada Therapeutics, a subsidiary of AbbVie, to develop therapies that can cross the blood-brain barrier (BBB)
PopEVE Aims to Fast-Track Rare Disease Diagnoses by Ranking Genetic Variant Severity
A new artificial intelligence model, popEVE, could accelerate diagnoses for rare, single-variant genetic diseases by scoring how likely each genetic change in a patient’s genome
