Our theory of change
We believe that by uniting patients, families, researchers, and clinicians worldwide in a collaborative community, we can accelerate the understanding and treatment of voltage-gated calcium channelopathies.
We are building a global network
- Connecting and building a community for diagnosed families within the calcium channelopathies.
- Connecting and building:
- a community for diagnosed families within the calcium channelopathies
- a community for researchers and clinicians with interests in calcium channelopathies
- Bringing families and scientists together to align goals, support each other and accelerate progress.
- Breaking down silos and bringing diverse perspectives together for greater impact.
We are amplifying the patient voice
- Incorporating patient-derived insights to guide research priorities and outcomes.
- Empowering patients to actively participate in and contribute to research efforts.
- Ensuring that the patient voice is heard and valued at every stage.
We are driving research and treatment
- Focusing on the 10 voltage-gated calcium channel genes and the ten associated disorders together as one group.
- Using the power of our collective community to support and accelerate research.
- Creating an environment of shared commitment, integrity, and shared stake in success.
- Exploring VGCC associations to larger neurodegenerative and neuropsychiatric disorders such as Parkinson's and Alzheimer's.
Monthly collaboration
To achieve these goals, we meet monthly to share updates, discuss challenges, and strategise on our collective efforts. These meetings provide a vital platform for collaboration, ensuring that all voices are heard and that we remain aligned in our mission.
By uniting patients, families, researchers, and clinicians in a collaborative, patient-centred community, we believe we can drive breakthroughs in understanding and treating voltage-gated calcium channelopathies, ultimately improving the lives of those impacted by these conditions.
