Mary Anne Meskis

The Rare Disease Diversity Coalition is dedicated to addressing the extraordinary challenges faced by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH). The Coalition brings together rare disease experts, patients, health care professionals, diversity advocates, and industry leaders to bring about evidence-based solutions that alleviate the disproportionate burden of rare […]

The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.

Rare & Ready: A Genetic Condition Coalition believes policies must make sure that patients with rare or genetic conditions can get the care they need. These patients deserve access to new FDA-approved therapies as soon as they are available. We need to mitigate state Medicaid program hurdles that limit access.

The mission of Parent to Parent is to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.

As a CSSSE Advisory Group member, DSF will make key contributions to the project, including: Review of Needs Assessment results (Navigator and participating school nurses) – provide recommendations on PD, tools, and resources to address identified nursing practice gaps Identify key resources to populate a NASN web page dedicated to a whole child/student-centered approach to

In 1973 as a result of the need for profound changes in mental health services, the Alliance was incorporated in Los Angeles as the Coalition of Spanish-Speaking Mental Health Organizations (COSSMHO). Since then the organization has grown and expanded to reflect the changing needs of the people and communities served.   Today, the National Alliance for

Mason’s Movement Foundation is a 501(c)3 non-profit, established in 2020 by Matt and Amanda Langford in loving memory of their son, Mason Langford.  Their foundation supports families locally, nationally, and internationally through research funding, grief support to families, and aid to those in need. They live to let Mason shine, and his legacy lives on through

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. They envision a globally connected community equipped to eliminate the challenges of rare disease.