Living with a rare disease often means more questions than answers. Families may feel isolated, patients may feel unheard, and caregivers may feel overwhelmed.
RareLink was created to change that.
Here, you can:
Share experiences, support, and encouragement
Discover others nearby who understand your journey
Be part of a growing rare disease community
How to Read the Map?
This map brings together rare disease communities across Malaysia. Each pin represents someone who wants to connect — whether they’re a patient, a caregiver, or simply a supporter.
Patients
Caregivers
Supporters
Each layer represents a different rare condition. Toggle layers on or off to explore specific communities.
Your privacy matters. Pins only mark general locations, never exact addresses. This way, families can connect safely while still finding others nearby.
Pin Yourself
Add your role (patient, caregiver, supporter, advocate) and general location.
1
Connect Nearby
Browse the map and discover families and patients close to you.
2
Join a Group
Access regional WhatsApp or online communities where stories, advice, and encouragement are shared.
3
It starts with a dot, but grows into a community.
We know how important safety is. That’s why RareLink is designed with trust first.
Only general locations are shown (never exact addresses)
You decide if you want to connect with others
Groups are moderated for respect and accuracy
is powered by
an NF1 awareness campaign committed to building stronger networks for rare disease awareness and support.
Explore tools and guides created to support patients, caregivers, and advocates.
Want to join RareLink as a patient, caregiver, or supporter? We’d love to have you!
Fill in the quick form below, and we’ll connect you to the right place.
Together, we grow stronger.