Meet our Patient Worthy Partners

Patient Worthy partners with rare disease advocacy groups to help spread awareness, cover group events and highlight patients and their experiences. Regardless of whether or not your group is an official partner, we encourage all advocacy groups to share any aspect of our content that might help patients and caregivers in your organization.

ALD Life

ALD

Amyloidosis Foundation

Amyloidosis

Aplastic Anemia and MDS International Foundation

Aplastic Anemia &
Myelodysplastic Syndromes (MDS)

Avery’s Angels

Gastroschisis

Born a Hero

Pfeiffer Syndrome

Breathe With Me

Cystic Fibrosis

Burning Nights CRPS

Complex Regional Pain Syndrome (CRPS)

CysticLife

Cystic Fibrosis

The Cystinosis Research Network

Cystinosis

Danny’s Dose

Hemophilia

Dupuytren Research Group

Dupuytren Disease

Dysautonomia Advocacy Foundation

Dysautonomia

The Ehlers-Danlos Society

Ehlers-Danlos

The FH Foundation

Familial Hypercholesterol-emia

HSAN1E Society

Hereditary Sensory Autonomic Neuropathy Type 1E (HSAN1E)

HCU Network America

Homocystinuria

IWMF

Waldenstrom Macroglobulinemia

Leuko-dystrophy Resource & Research Organisation

Leukodystrophy

MDS

Myelodysplastic syndromes

NORD

Rare Disease

The Oley Foundation

Gastroschisis
Short bowel syndrome
Systemic Scleroderma
Gastroparesis

PBCers Organization

Primary Biliary Cholangitis

Personalize My Medicine

Rare Disease

The PTEN Hamartoma Tumor Syndrome Foundation

PTEN Syndromes

The PURA Syndrome Foundation

PURA Syndrome

Red Fred Project

Rare Disease

Rare & Undiagnosed Network (RUN)

Rare Disease

Remember the Girls

X-linked Recessive Disorders

United Leukodystrophy Foundation

Leukodystrophy

WAPO

Hypopituitarism

WWGM

World Without GNE Myopathy

Fermer le menu