LACNETS

Learn Advocate Connect Neuroendocrine Tumor Society.

Pheo Para Patient Initiative Incorporated

Our Team Speakers Bureau Pheochromocytoma Paraganglioma Peer Support Newly Diagnosed Care Kits Clinical Care Guidelines Center of Excellence Program PatientFocused Research International Symposium on Pheo Peer Support 1 on 1 and monthly peer support meetings Center of Excellence Program Find an Experienced Medical Team learn more Pheo Para Educational Video Library help others Pheo Para Alliance NEWS EVENTS keeping you up to date 2025 Rare Disease Day Posted on 25th February 2025 Nominate a Phriend for a 2025 Volunteer Award.

PHEO ALLIANCE

Advocacy, awareness and support for those affected by #pheochromocytoma/ #paraganglioma The mission of the Pheo Para Alliance is to invest in research to accelerate treatments and cures while empowering patients, their families, and medical professionals through advocacy, education and a global community of support.

• Heart and Circulatory System

• 4.

Norcal Carcinet Support Group

We are a Community of those living with and support those with NETs - Our origins are in Northern California, but we welcome all from around the world.

• Management & Technical Assistance

• 5.

Pathways Corp

To elevate the patient's voice to increase access to care and eliminate bias by bringing stakeholders together Home Our Team Events Initiatives Partners Media Kit Contact More Its Time to Listen to the Rare Disease Community.

• Birth Defects, Genetic Diseases

• 6.

Shwachman-Diamond Syndrome Alliance Inc

Shwachman-Diamond Syndrome Alliance is a nonprofit aimed at accelerating research and therapy development for this rare disease.

• Fund Raising and/or Fund Distribution

• 7.

Tbc1D24 Foundation

Tbc1d24 foundation is a research organization and connecting site for caregivers, families, and those diagnosed with Tbc1d24 mutations.

PACIFIC NORTHWEST RESEARCH INSTITUTE

PNRI unravels the powerful mysteries of genetics to drive future medical breakthroughs.

• Specifically Named Diseases

• 9.

CTNNB1 Connect and Cure Inc

Connecting families, raising awareness, finding treatments and a cure for CTNNB1 Syndrome 🧬💛💙 https://t.