What we do

The Connective Tissue Project is a nonprofit initiative created to support individuals living with connective tissue disorders and complex related conditions. We provide guidance, advocacy, resources, and assistance to help patients access proper care, navigate medical systems, and feel supported on their journey.

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We are here because patients with conditions like EDS, CCI, IIH, POTS, MCAS, and immune dysregulation are too often dismissed, misdiagnosed, and left without answers or support.
No one should have to fight this battle alone.

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Patient Advocacy and Navigation

We help patients understand their conditions, prepare for medical appointments, and confidently advocate for themselves.

Our support includes:

  • Care navigation & referral guidance

  • Appointment preparation support

  • Advice on obtaining and understanding medical records

  • Advocacy tools for self-representation in care

Education and Awareness

We provide accessible information on connective tissue disorders and associated conditions, helping patients and families understand complex symptoms and treatment pathways.

We focus on:

  • Ehlers-Danlos Syndrome (EDS)

  • Craniocervical & cranial-cervical instability (CCI/AAI)

  • Dysautonomia & POTS

  • MCAS & immune dysfunction

  • CSF pressure and cerebrospinal instability disorders

Community and Emotional Support

Rare disease is isolating.
We create connection, understanding, and community.

Patients deserve:

  • A safe space to be heard

  • Peer support

  • Encouragement and shared experience

  • Programs that reduce isolation

You are not alone here.

Specialist and Resource Connection

Finding the right medical team is overwhelming.
We help direct patients toward:

  • Experienced specialists

  • Support networks

  • Patient-led resources

  • Evidence-based education channels

Medical, Travel and Financial Support

Many patients must travel long distances for care.

As funding grows, we will help with:

  • Travel resources for specialist appointments

  • Assistance funds for uncovered medical costs

  • Mobility & accessibility equipment support

We are building a system of support for those the system overlooked.