Dr Rick Thompson
CEO, Findacure
Rare disease patient groups act as a focal point for a rare condition. They create a community through shared experience to break the isolation of rarity.
After 2020, we all understand how isolation takes a huge toll on your mental health. The isolation a rare diagnosis imposes comes from the sense that nobody shares your experiences. Patients are handed a disease name, a printout from Google, told there is nothing to be done and left to live with their condition.
Breaking isolation, providing hope
Rare disease patient groups act as a focal point for a rare condition. They create a community through shared experience – connecting affected individuals who can learn from one another and gain hope. Patient groups break the isolation of rarity, but they also do so much more.
Unlocking the potential of the rare community
As an organisation, we support rare disease patient groups. Most are small, voluntary organisations run by those affected, despite having no experience in healthcare or charity.
Rare disease patient groups will keep working with scraps of time and money. Their impact cannot be questioned, yet their importance often is.
In 2020, many worked to provide their community with COVID-19 guidelines specific to their condition. They found ways to deliver conferences online and organise virtual meetups so patients could feel connected. They supported their community with little time and less money.
Small group, big achievements
In 2020, one group from our Patient Group Mentoring programme stood out. Over the course of a single year, The EOS Network:
- Launched a new website receiving 3,500+ visitors a month.
- Formed a network of 200 patients and carers.
- Formed a network of 100 doctors from 19 countries.
- Submitted three Health Technology Assessments (HTAs) to Scotland, England and Canada. Scotland approved and recommended the drug for use, while NICE in England delayed a decision due to COVID.
The EOS Network embodies the determination of rare disease patient groups when looking to form connections, facilitate research and advance their rare conditions’ awareness and treatment.
Remember the little guys
The 2021 charity world is brutal. Securing funds and attention in a COVID-dominated world is near-impossible. Rare disease patient groups will keep working with scraps of time and money. Their impact cannot be questioned, yet their importance often is. If you can support a charity this year, why not a rare disease patient group? They will help someone who feels isolated and hopeless in these strange times.
