Lifesaving Global Rare Disease Patient Registry

by Timothy Syndrome Alliance (TSA)
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry
Lifesaving Global Rare Disease Patient Registry

Project Report | May 22, 2024
Did the 'For The Love of CACNA1C' campaign work?

By Sophie Muir | Chair of Trustees

In our last report, I shared how collaborating as a team can significantly impact rare diseases, whether through advocacy and awareness, patient-centred care, or research and innovation. When it comes to rare diseases, we are stronger together, and it's great to have you on the team!

Throughout February we ran a ‘For The Love Of CACNA1C’ campaign on our social media channels to continue to raise awareness of our rare disease. We worked together as a community to create personal messages of hope and support to signpost CACNA1C individuals, families and carers who may not have found us yet. With your support, we can spread the word far and wide. The growth of our community increases knowledge and understanding of our disease-causing gene, we are dependent on it.

Did the ‘For The Love Of CACNA1C’ campaign work?

It totally did.

I've created a graph to illustrate the impact you have made from supporting our social media channels. The pink colour represents the months of this year to date. Look at the numbers for March following the February campaign!

Throughout April, we launched another campaign, this one involved close collaboration and planning with our families in Brazil to ensure we accurately represented the stories and messages they wanted to share. All our posts during April were in Brazilian Portuguese as well as English.

Look at the numbers for May and it’s only the 22nd!

We are delighted to share that the growth in May includes a family in Brazil, meaning we are now in contact with, and able to support, 8 CACNA1C families in Brazil.

As our community expands, real-world healthcare data can be converted to evidence through the CACNA1C Community Registry (which currently has 72 participants) to accelerate and support clinical and basic research.

Teamwork does make the dream work.

Thank you for all your support.

You are making a difference.

Share on Twitter Share on Facebook

Jan 24, 2024
Teamwork makes the dream work

By Sophie Muir | Chair of Trustees

Sep 28, 2023
Post CACNA1C Conference update

By Sophie Muir | Chair of Trustees

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Organization Information

Timothy Syndrome Alliance (TSA)

Location: Gloucestershire - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @tsa_charity
Project Leader:
Sophie Muir
Gloucestershire , United Kingdom

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