Rare Disease Day 2020
Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The key messages of the 2020 campaign are:
Rare is many worldwide.
Rare is strong every day.
Rare is proud everywhere.
Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008.
We will be celebrating Rare Disease Day on 29 February – join us!
On social media:
- Share a photo to show solidarity with people living with a rare disease in your community! Share a photo with painted hands on social media using #RareDiseaseDay and tag @rarediseaseday.
- Share our posts throughout the next few weeks and follow Rare Disease Day on Facebook, Twitter and Instagram for more
- Use the official Facebook frame and Twibbon
RDD will also be setting up two new private Facebook groups − one for patients affected by rare conditions and one for parent carers of people affected by rare conditions. The groups will provide a space for the rare community across the UK to come together to share peer support, information and find others affected by the same condition.The groups will be launching at the beginning of February, if you would like to register your interest or for more information please email firstname.lastname@example.org.
Organise an event:
Every year, thousands of events are organised around the world to mark the occasion of Rare Disease Day. Organise an event ay work, with your friends or family, during or around the month of February to raise awareness. Don't forget to share pictures and videos using #RareDiseaseDay
Share your story:
Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial. https://www.rarediseaseday.org/tell-your-story
If you'd like us to share your story on our website or social media too, please email email@example.com
Attend an event:
Rare Disease Day are hosting three receptions. We are particularly excited to have a pituitary patient sharing her story at the Welsh Assembly Reception - this is a wonderful opportunity to raise more awareness of pituitary conditions.
Click below for more info and tickets:
- Senedd (Cardiff) - 18:00 - 20:00, Tuesday 25 February
- Westminster (London) - 12:15 – 12:45, Wednesday 26 February
- Holyrood (Edinburgh) - 18:00 - 20:00, Wednesday 4 March
They are also hosting a Rare Film Festival on 10 Feb at the Regent Street Cinema, more info and tickets here
Take part in a study:
The CONCORD (COordiNated Care Of Rare Diseases) Study is looking for participants to take part in focus groups (either face-to-face or virtual) to discuss their preferences for models of coordinated care. Participants must either be a patient affected by a rare or undiagnosed condition, or a carer of a patient affected by a rare or undiagnosed condition. They must be aged 18 or over.
The following focus groups are taking place:
- Tuesday 4 February (online)
- Thursday 20 February (in Birmingham)
More detail about the CONCORD study and focus groups, including adverts which you can share with your community, can be found here