Challenges

LDA Research is an international medical market research agency based in the UK that works with clients in the pharmaceutical industry and medical device sectors. The agency offers access to a diverse patient population worldwide and actively recruits hard-to-reach individuals, including those with rare diseases and healthcare professionals working in highly specific fields.

Their research observed that individuals affected by a rare diagnosis frequently reported feeling isolated or alone in their struggles. According to the European Union, a disease is considered rare when it affects less than 1 in every 2,000 people. To address this issue, they wanted to create a community for such individuals, providing them with a space to connect and find the understanding they deserved. This initiative would also serve as a platform for LDA Research to share its resources with group members and aid in recruiting individuals for research opportunities who were previously difficult to reach.

Solution

We named this community the Rare Disease Network. We created a new, unique brand for the group that was different to but complemented the LDA Research parent brand. Additionally, we made the decision to make the group private on Facebook to provide members with a secure space to share their experiences and give the group an exclusive appeal to potential members.

With the foundations of the Rare Disease Network set, we concentrated our efforts on community building. We achieved this by producing a highly targeted email campaign inviting appropriate recipients from LDA’s existing database to become founding members. In addition to this, we also turned to Reddit, engaging with communities in various rare disease-specific Subreddits to expand the group's support and invite others to join.

To foster engagement within the Rare Disease Network’s community, we facilitated group discussions and moderated groups. We used their interactions to guide us in producing content plans that we knew would add real value to the community. Our plans included sharing unique research insights and encouraging group members to share their thoughts and opinions on them. We also developed a group exclusive web series called 'Ask-Me-Anything', giving members the opportunity to ask their questions to different doctors and rare disease specialists. The series is tailored to the needs of the community and offers a relaxed environment for members to interact with healthcare professionals.

One of the most notable features of this project is the Rare Together podcast. Its purpose is to give a voice to those impacted by a rare diagnosis while also providing them with a platform to raise awareness about their condition. The podcast has been widely successful in the Rare Disease Network and beyond and has helped listeners gain a better understanding of the challenges faced by those living with a rare disease.

Impact

The Rare Disease Network has brought together people affected by rare diseases from across the globe, and at the time of writing, we are on track to reach 500 hard-to-reach members in under six months. The group has fostered genuine connections between members from all over the world, who share their experiences and bond over their common challenges

Following the success of Series 1 of Rare Together, another series has been commissioned so that more inspiring stories can be brought to light.

Rare Together was nominated for the Prolific North Marketing Award 2023 for Best Social Purpose Campaign.