Health Haven

Check out our latest updates! 👀📲

Our Health Haven app is now more interactive, informative and specialised for rare disease warriers than ever before. With the ability to respond to questions from the community, search for neurology specialists and access exclusive workout videos plus event livestreams, you don’t want to miss out on our newest features.

Make sure to click the link in our profile to download and try today. If you already have Health Haven downloaded, make sure to update our app to access the features! 💙

Underneath the big wins often lies a triumph more subliminal than one might first notice.

The greatest teams, the best players. They all faced adversity. They all pushed through. They all said yes when millions of others would have said no.

That in itself makes them a rare breed. Recognising and being comfortable in adverse situations is something that both our rare disease community and the likes of Pulisic have in common.

That’s something you can’t pay for - you’re quite literally born with it.

Underneath the big wins often lies a triumph more subliminal than one might first notice.

The greatest teams, the best players. They all faced adversity. They all pushed through. They all said yes when millions of others would have said no.

That in itself makes them a rare breed. Recognising and being comfortable in adverse solutions is something that both our rare disease community and the likes of Pulisic have in common.

That’s something you can’t pay for - you’re quite literally born with it.

Who are we rooting for then? 🏴󠁧󠁢󠁥󠁮󠁧󠁿 🇵🇦 🦓

Recapping our second live event for rare disease patients: Living Beyond Limits.

Swipe to see the unique talents, fun workshops and beautiful music that participants enjoyed in New York! 🎵💙

Thankful to work with to deliver such an engaging and important event for the rare disease community.

Keep your eyes peeled for our third live event 👀

Get excited! Have a look at the agenda for our Living Beyond Limits event this weekend. With the opportunity for community connection, unique art appreciation and engaging patient workshops, this event is not to be missed. We also had various challenges and give aways to take part in. Keep your eyes peeled for more information about those 👀
Food and drink will be provided throughout!
Click the link in our profile to book your slot so you don’t miss out 💪💙

Following the success of Myelin & Meaning last Summer, we are beyond excited to announce our second live event- ‘Living Beyond Limits’.

In collaboration with we are looking forward to showcasing the talent, creativity and resilience of people living with neurological and immune-mediated conditions. This unique event is also the perfect opportunity to connect with others within the rare disease community. 💙🧡💙🧡

Make sure to save the date and sign up using the link on our profile- you don’t want to miss out! 🏃‍♀️‍➡️✍️

Today is Rare Disease Day.

Join us - as we do daily - in putting the rare disease community at the forefront of your minds and actions. Whilst so much has been done, there’s still so much left to do.

More awareness amongst primary and secondary care for faster referrals and more accurate diagnoses.

More support options for patients living with rare diseases outside of their treatment plans.

More collaboration and community presence for reducing isolation, spreading awareness and improving the quality of life for those affected - patient and caregiver alike.

Here’s a brief recap of the progress we made last year in the above. We’re only getting started.