Patient Advocacy Group Spotlight Series
Get to Know These Patient Advocacy Groups
We are pleased to present a series of articles from various reputable patient advocacy groups. These informative features highlight resources each organization offers to help you overcome the challenges that cancer or rare diseases often pose. Our goal at Biologics is to help you thrive as you seek treatment, and our collaboration with these nationally recognized organizations is an important part of that mission.
The Carcinoid Cancer Foundation’s mission is to increase awareness and education among the general public and healthcare providers about neuroendocrine tumors (NETs), to support NET cancer patients and their loved ones, and to serve as patient advocates. There are at least 175,000 people living with NETs in the United States.
The Aplastic Anemia and MDS International Foundation (AAMDSIF) is the world’s leading nonprofit supporting people affected by bone marrow disorders. It helps patients in all stages of treatment, providing information, support services, and a caring community.
The National Neutropenia Network supports those affected by neutropenia, a rare blood condition. It aims to promote awareness, education, and research, while providing a support system for patients with chronic neutropenia.
CureDuchenne was founded in 2003. Today, it is recognized as a global leader in research, patient care and innovation for Duchenne muscular dystrophy (DMD). The organization also founded the CureDuchenne Certified Physical Therapy Program to train physical therapists to meet the special needs of DMD patients.
The ACPMP Research Foundation was founded in 2008. Its mission is to fund research to find a cure for appendix cancer, PMP and related peritoneal surface malignancies; and to fund and support educational programs for physicians, clinicians, patients, family members and caregivers.
The Association for Creatine Deficiencies aims to provide education about CCDS; to advocate for early intervention through newborn screening; and to promote and fund medical research for effective treatments and cures.
No Stomach For Cancer Foundation aims to advance awareness about stomach cancer; provide a support network for affected families; and encourage research efforts for early detection, screening and prevention of the disease.
The Cholangiocarcinoma Foundation is the largest foundation that serves cholangiocarcinoma. It is dedicated to educating and supporting patients by providing the personal guidance and tools they need to navigate this complex disease.
The SYNGAP1 Foundation was founded in 2014. Today, it is the leading non-profit patient advocacy group dedicated to improving the quality of life for patients and families affected by the rare SYNGAP1 gene mutation or a variant.