Congratulations to the 2021 Financial Advocacy RARE Patient Impact Grant Awardees!
The Akari Foundation
Ariel and Enrique Najera are the reason behind The Akari Foundation. The two 11-year-old fraternal twins, both diagnosed with Duchenne Muscular Dystrophy, inspired the foundation to create information and support for low-income families and Hispanic immigrants.
ALD Connect is a consortium that brings together patients, families, advocacy organizations, physicians, scientists, and other stakeholders centered around adrenoleukodystrophy (ALD). Our mission is to improve health outcomes for patients with adrenoleukodystrophy by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
The Angelman Syndrome Foundation
The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.
The DDX3X Foundation
The DDX3X Foundation is a nonprofit organization founded in 2015 to find a cure for DDX3X Syndrome. The Foundation supports existing research, education, and treatment programs focused on DDX3X Syndrome. The Foundation has three primary functions: research, connecting families, and raising awareness.
The Dup15q Alliance
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.
The E.We Foundation
The E.WE Foundation is a 501(c)(3) nonprofit healthcare advocacy organization. Our mission is to support families affected by Edwards Syndrome, commonly known as Trisomy 18, while changing the medical perspective through efforts of advocacy, education, and public policy. Edwards Syndrome is a rare genetic chromosome abnormality. There is no cure or treatment for Edwards Syndrome and statistically, only five to 10% of infants born will live to see their first birthday. We believe early access to diagnostic therapies and global resources can create better health outcomes for chronically ill Trisomy 18 infants.
RareKC was created to connect the rare community – to empower our voices and inspire innovation throughout the medical and research community – all for the single purpose of rare. We will bring together both the passion and resources of our rare community in order to elevate our strength in numbers and foster an environment of hope for ourselves, and everyone else that joins us in this journey.
The United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation’s mission is to promote research and education for the diagnosis, treatment and cure for mitochondrial disorders and to provide support to affected individuals and families. The United Mitochondrial Disease Foundation (UMDF) focuses on coordination, communication and collaboration. We bring people and resources together to impact the diagnosis, treatment and cure for mitochondrial disease.