How Huntington's Disease Youth Voice transformed our social media and introduced a special Instagram channel for young people.

When we launched our Huntington's Disease Youth Engagement Service's brand new Youth programme, 'Huntington's Disease Youth Voice' (HDYV) we had high hopes for how they would impact our social media as they were our target audience for our youth channels. Little did we know just how much this initiative would transform our social media presence and, in turn, our entire community. Today, we're excited to share the incredible journey we've been on with them.

At the heart of the project lies the passionate, dedicated and incredibly talented group of young individuals who make up Huntington's Disease Youth Voice. From the very beginning, they embraced our goals with open arms, and their enthusiasm became the driving force behind our youth social media transformation.

Engagement Beyond Measure

One of the most significant ways Huntington's Disease Youth Voice impacted us was through their thoughtful engagement. They didn't just follow our social media channels; they actively participated in the conversation, provided content and supported our social media channels. Their willingness to share their thoughts and expertise on Huntington's disease opened up new avenues of understanding for all of us.

With their contributions, our social media presence evolved into a platform for not only sharing information but also fostering meaningful discussions.

Creating Captivating Content

Content is king in the world of social media, and we were fortunate to have Huntington's Disease Youth Voice members on board, lending their creativity and energy to our cause. They took the initiative to craft compelling posts, share personal stories, and provide feedback to create visually appealing graphics. Their fresh ideas influenced our content strategy for our youth engagement channels. Every piece of content they produced reflected their genuine passion for raising awareness about Huntington's disease.

Our social media channels became more than just information hubs; they became platforms for storytelling and connection making sure that they were reminding other members of the youth community that they’re not alone and there is support.

Invaluable Feedback

Perhaps one of the most crucial contributions of Huntington's Disease Youth Voice was their invaluable feedback. They were not shy about letting us know what worked and what needed improvement. This open and honest communication allowed us to fine-tune our communication and tailor it to the needs and preferences of our audience.

They played a pivotal role in creating questions for discussion, reviewing monthly themes, and suggesting ways to enhance our engagement strategies. Their insights guided us in making informed decisions, ultimately leading to the growth and improvement of our social channels.

Integral to Growth

As we look back on our journey, we can confidently say that Huntington's Disease Youth Voice has been integral to our growth. Their unwavering dedication, creativity, and feedback have propelled us forward in ways we could not have achieved on our own.

But that's not all; Huntington's Disease Youth Voice brought forth an exciting addition to our online presence. Recognising the need to cater specifically to young people, we introduced an additional Instagram channel. This new platform allows us to provide tailored content that resonates with the youth, ensuring that our message reaches the hearts and minds of those who matter most. 

A Bright Future Ahead

Today, our social media channels are not just about communicating information; they are vibrant communities where individuals affected by Huntington's disease and their loved ones come together to learn, share, and support one another. This transformation would not have been possible without the incredible contributions of Huntington's Disease Youth Voice and the introduction of our youth-focused Instagram channel.

Huntington's Disease Youth Voice has left its mark on our social media presence and opened up a new avenue for connecting with young people. Their engagement, content creation, and feedback have reshaped our online identity, making it a powerful platform for advocacy, awareness, and connection.

We are immensely grateful to the passionate young individuals who make up Huntington's Disease Youth Voice, and we look forward to the bright future that lies ahead as we continue to amplify our collective voice.