Health Haven

11/10/2026

Only one week to go until our third in person event- Rare in Motion! 🏃‍♀️💙

We are thrilled to be partnering and hosting RareMotion with Know Rare | Rare Disease Advocacy who have a shared goal of informing, supporting and empowering the rare disease community people with rare diseases when it comes to exercising!

Take an in depth look at our agenda which goes into detail about the workshops, presentations and Q&As covering not physical but emotional health.

Make sure to sign up for free using the link in our bio! We welcome the people with rare diseases, caregivers, family and friends to join in person and via Livestream. The is accessible through the HealthHaven app.

See you there! 💪🏊‍♀️

*Updated location of the Positive Exposure Gallery, 83 Maiden Lane, 4th Floor, NYC (Financial District)*

10/10/2026

Our founder, Edward, will be hosting Rare in Motion on Sunday, Oct 18! 💙💙💙

It’s a free evening for people living with rare neuromuscular conditions and their families: exercises you can do at home with physical therapists, real talk about emotional health, a research update, and networking. Join us in NYC or online.

Make sure to register using the link in our bio.

05/09/2026

Isolation and uncertainty shouldn’t be the first 2 things that come to mind when you think about your rare disease. We’re on a mission to change the narrative.

In time for our upcoming in person event in October- Rare in Motion- get the scoop on why Health Haven events simply can’t be missed.

Many of our community members have connected with others with the same rare disease for the first time at our events, and this is just the beginning.

Listen to Edward, Health Haven’s founder, go into more depth about the support we offer at these events and why you should register for our next get together.

Stay tuned for registration details… coming soon 👀

03/09/2026

Shout out to our partners and friends over at Inflammatory Neuropathies UK! We’re looking forward to our IN conversation on September 14th at 7am EST. Details to follow.

Have you heard about Health Haven?

It's an all-in-one platform for GBS, CIDP and MMN patients. You can use it to connect with a supportive community, book vetted neuro-physios, track symptoms and medications with reminders, and access practical resources.

Founded by someone impacted by MMN, it's built by someone who truly understands the journey.

Find out more: https://healthhavenapp.com/

05/08/2026

Have you recently been scanning Social Media for answers to your burning rare disease questions? Joined Facebook groups for community queries? Wanted an opinion from another patient?

It’s now easier than ever to find out answers to all your queries from both our Health Care Professionals and community members. Many who have also experienced the unique challenges that come with living with a rare disease.

Available for the first time EVER as an app and on web- log into Health Haven to get the answers you’ve been looking for.

👀💙

08/07/2026

Do you often search ChatGPT for advice about your rare disease? Are you worried about getting incorrect information? Do you want to hear directly from people who have personal experience living with rare diseases?

We are proud to say that Health Haven offers a unique opportunity to connect with others in the community and have questions answered directly by our rare disease experts. You can’t get this type of information from AI!

Try Health Haven for yourself by clicking the link on our profile!

06/07/2026

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! 💙

02/07/2026

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.

02/07/2026

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.

27/06/2026

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