Rare Disease Connect

19/10/2026

Behind every rare disease is a person, a family, and a search for answers.

For many rare diseases, effective treatment remains out of reach. The FDA’s new Rare Disease Framework Initiative aims to address challenges in developing and reviewing treatments, while giving greater consideration to patient and caregiver experiences.

The conversation is open to the rare disease community.

The FDA is holding a public meeting on October 28, 2026, to gather input on the initiative. Patients, caregivers, researchers, and advocacy organisations can follow the discussion and contribute their perspectives.

Every perspective can help inform how rare disease treatments are developed in the future.

🔗 Learn more about the initiative and public meeting.
Link in the comments.

17/10/2026

Living with a rare disease isn’t always visible. Fatigue, pain, uncertainty, and emotional challenges are part of the daily reality for many. 💙
At Rare Disease Connect, we believe every experience deserves to be seen, heard, and understood.

15/10/2026

Researchers are looking for people like you. We’re Olivia and Duha, and this is why we started Rare Disease Connect.

If you’re living with a rare condition, or caring for someone who is, we’d love you to join our community. 💙

Join here: https://rarediseaseconnect.com/register/

14/10/2026

11/10/2026

Research doesn’t have to be complicated.
At Rare Disease Connect (RDC), we believe everyone deserves clear information about research, and the freedom to decide for themselves.

Here’s what you’ll find:
• The different forms research can take
• What happens when you express interest (it doesn’t commit you to anything)
• Your rights as a research participant
• Why you don’t need to take part in research to join RDC

Taking part in research is always your choice.

01/10/2026

When you're living with a rare disease, the latest updates and research opportunities can be hard to find. They shouldn't be. 💙

That's why we created Rare Disease Connect.

RDC brings condition-specific information, updates, research opportunities, and community together in one place, helping people living with rare diseases and their caregivers find what's relevant to them.

Whether you're looking to understand your condition, stay up to date, find out about studies you could take part in, or connect with others who understand, RDC is here to simplify your rare disease journey.

Navigate. Connect. Discover.

🔗 Explore RDC through the link in our bio.

28/09/2026

In 2021, doctors in Germany treated a young woman with severe lupus using a therapy originally developed for blood cancer. She went into remission without ongoing lupus medication.

That therapy is CAR-T: a person's own immune cells are collected, reprogrammed in a lab, and returned to the body to reset the part of the immune system driving the disease.

Five years on, larger lupus trials are underway, including studies that could support future approvals.

It's important to be clear: CAR-T is still being studied, mostly in people with severe lupus that hasn't responded to other treatments. It's not yet a standard treatment. But it shows how far lupus research has come.

26/09/2026

Supporting someone with lupus isn't always about doing more. Sometimes, it's about listening, understanding, and simply being there. 💙

Every person's experience with lupus is different, and so is the support they may need.

Learn more about lupus and connect with the RDC community through the link below.

https://rarediseaseconnect.com/lupus/

26/09/2026

Living with a rare disease can mean more questions than answers.

Finding reliable information, understanding your condition, and knowing where to turn can be challenging.

Rare Disease Connect is here to help make that journey a little less isolating. 💙

Education. Research. Community.

25/09/2026

Lupus & research 🔬🦋

Research helps us learn more about lupus, discover better ways to manage the disease, and understand the experiences of people living with it.

At Rare Disease Connect, we believe people living with rare diseases should have opportunities to stay informed and get involved in research.

Learn more and connect with the RDC community through the link below.
https://rarediseaseconnect.com/community-general/