Rare disease day highlights the impact of rare disease on millions of people all around the world. There’s loads of ways you can get involved to support this incredible day, whether that’s sharing your rare story with us, organising your own event or even taking part in our own #ShowYourStripes sock campaign!
Whether you’re new to the rare disease world, or you’re already a rare disease advocate, there’s always something new to learn and get involved with, so what better way to celebrate by gearing yourself up with Medics4RareDiseases?
Here’s just a few ways you can get involved in the run up to Rare Disease Day on 28th February and on the day itself!
1. #ShowYourStripes for Rare Disease Day on February 28th
This year, Medics 4 Rare Diseases is asking you to #ShowYourStripes on Rare Disease Day to raise awareness for those with a rare disease. All you’ll need to do is take a quick snap of you and your stripey socks and tag us in your posts @medics4rarediseases with the hashtags #ShowYourStripes for #RareDiseaseDay. You don’t have to wear socks though! Anything striped will be work!
We’ll share all posts we’re tagged in and add them to our very own online #ShowYourStripes gallery to look back on! Make sure you tag us though or we won’t see them!
If you would like to be added to our #showyourstripes gallery on our site, email email@example.com with your photo in advance of Rare Disease Day.
We can’t wait to see your posts! Learn more about the campaign here.
2. Complete the Rare Disease 101 Module
If you’re a medical student or health care professional who wants to know more about rare disease, this is the place to start. Our Rare Disease 101 module starts with a brief introduction to Rare Disease and covers many other important topics including The Role of Genomics, Understanding Common Challenges and Patient Advocacy Groups. You’re even rewarded with a certificate of completion at the end as well as given a whole bunch of valuable resources so you can continue your rare disease journey.
To sign up for the course visit the M4RD learn section of our site.
3. Attend The Unusual Suspects: Rare Disease in Everyday Medicine, 15th February @ The Royal Society of Medicine
Interested in hearing different perspectives of rare disease with incredible patients, advocates and doctors? Well, look no further than The Unusual Suspects event, all put together by Medics4RareDiseases and the Royal Society of Medicine. It really is a one of a kind event that offers invaluable advice on managing and diagnosing rare diseases in medicine, so be sure not to miss out! This year’s theme is mental health, so for those interested in hearing more about this topic, there’s plenty to hear about.
Plus, if you’ve never been to a Medics4RareDiseases event before, here’s your chance to meet us, learn about who we are and network with others, all over at The Royal Society of Medicine in London on 15th February.
View the line up here and book by emailing us at firstname.lastname@example.org stating “Book for The Unusual Suspects” in the email header.
4. Listen to our Rare Disease Podcast 4 Medics
Unless you have been living under a rock for the last couple of years, you may have heard that we do a little podcast (available on all streaming platforms!). Our Rare Disease Podcast 4 Medics is a place you can listen, learn and stay informed on all things rare disease with our wonderful CEO Lucy McKay and and our fab Training and Education Officer Melissa Clasen.
Just some of our recent topics include our Huntington’s in Mind podcast with Professor Ed Wild and our Listening to the Sickle Cell Community with Sickle Cell advocate Dunstan Nicol-Wilson. Dunstan will also be one of the speakers at our next Unusual Suspects event on 15th February.
5. Attend ‘Beyond the Student Voice Prize’ on Rare Disease Day 28th February
Beyond the Student Voice Prize; is an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get involved and continue your advocacy.
There will be a series of short inspiring presentations from a cross-section of individuals as well as handy guidance for getting more involved with the rare disease community and building a focus on rare into your career.
To book, jump on here.
6. Share your Colours for Rare Disease Day
If you’re a massive fan of all things social media and you fancy doing a little extra than our #showyourstripes campaign, give this a go! Rare Disease Day have released these super fun filters that allow you to change your hair colour and paint your face with blue, green and purple paints! If that doesn’t float your boat, you can opt for the social media profile frames or the global chain of lights filters.
As well as these, you can download banners and virtual backgrounds.
Here’s a handy video to show you how to use the Instagram and Facebook filters!
7. Attend the Rare-i-Tea Party, Saturday February 18th, 2pm – 4pm, Storey’s Field Centre, Cambridge.
Cambridge Rare Disease Network (CamRARE) are inviting you to join them for tea and cakes to celebrate this year’s Rare Disease Day at the Storey’s Field Centre in Cambridge.
This public event is open to all – children, families, those affected by rare conditions and those working with them, students, company representatives, scientists, healthcare professionals, and friends of CamRARE. Everyone’s welcome!
Get stuck into sensory and craft activities, or join in accessible indoor games with John Willis from Power2Inspire. Make edible DNA models with jelly babies (you can eat them after!), or take part in the fun, rare quiz.
Grab your free ticket here!