Health Haven

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.

Tired of your newfound friends, Google and Chat GPT? Want real answers from real patients as to what’s ‘normal’ and what might not be when a new symptoms come out of nowhere?

Join our community of others finding answers to those same questions you’ve been asking - trusted by hundreds around the world, and proudly helping the NHS.

Founded by patients, for patients.

Moments of beauty, captured in time- Part 2.

Too often the imaging around diseases and medical conditions is of a clinical nature. In partnership with Positive Exposure, we help to bring out the hidden beauty locked away within all rare disease patients - empowering them to remember who they really are and take a brave step towards recovery.

Raising awareness, representing MMN, GBS and CIDP and showcasing the day to day realities of living with a rare disease is a key pillar of what we do at Health Haven. 💙💙💙

Join the community today and start your journey towards certainty, peace of mind and a future where your disease no longer defines you!

Meet the many faces of MMN, CIDP and GBS! We are delighted to have worked alongside Positive Exposure at the NYC Canvas 3.0 this past Summer to shine a light on people with rare diseases. 💙📸☀️

Get ‘up close and personal’ with these amazing portraits showcasing the array of people, support and inclusivity within our rare disease community.

Join the community of rare disease warriors taking their uniqueness into their own hands by downloading our app!

Our best upgrade yet! Dedicated to improving your health, organising medications and tracking symptoms, Health Haven’s latest developments are entirely focused on you and your rare disease! Alongside our traditional trainer, nutritionist and health specialist services, Health Haven can now be your own digital rare disease focused diary.

Download Health Haven today to try out our brand new specialised features! 💙✍️🥗🏋️‍♀️

Myelin & Meaning 2025 - NYC’s largest ever rare disease event for GBS, CIDP and MMN patients.

Manifesting all of Health Haven’s pillars of support in the flesh: Community formation, information dissemination from the world’s leading specialists, holistic support and symptom tracking.

The first of many more - stay tuned.

Many thanks to our partners for helping to make this happen.

📷:

We are delighted to announce our first two inspiring guest speakers for Myelin & Meaning:

Dr. Thomas Brannagan and Dr. Jonathan Rosenthal, MD.

Both speakers bring unique expertise within the field of neurology from medical and research backgrounds. We can’t wait for you to listen to their engaging speeches on July 26th 💙💚🙌

Scroll to read about their achievements in more detail as well as find out how to get to The Canvas 3.0, Oculus World Trade Centre where Myelin & Meaning is being held.

Make sure to book your place using the link in our profile!

&meaning

Save the date in your diary! ✍️

We’re proud and excited to be hosting our first conference event, Myelin & Meaning: Stories, Science & Support for the MMN, GBS and CIDP Community in collaboration with 💙💚

Sign up today to secure your place and experience a memorable day of learning, connection, interactive activities, practical advice and support.

Guest speakers to be announced soon 👀