Living with a rare disease is isolating, overwhelming and challenging. We recognise that not everyone in the rare community is comfortable using the term “rare disease” as, for some, it can have negative connotations and harmful misconceptions. We hear and understand this sentiment toward the term “rare disease.” It is why we try to include more inclusive terminology, such as “those living with a rare condition,” when appropriate in our communications and outreach.
We use the term “rare diseases” because that is how our field is identified. Healthcare professionals, industry members and policymakers use the term “rare disease” to drive progress forward for those living with a rare condition around the world. Researchers follow suit, using the term “rare diseases” alongside the terms “orphan drugs” and “orphan diseases.” Crucially, the general public has come to understand these conditions as rare diseases in the press.
Rare conditions are finally enjoying the visibility, awareness and research they deserve. We’ll be working to continue this trend, while honouring the preference of community members where appropriate in our work. The importance of language is always front of mind when crafting our communications. We want our work to speak to everyone in the rare community.
No one should face their rare journey alone. Beacon is with you and for you.