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Our mission is to advance collaborative research that will improve the quality of life for people with MEPAN and related disorders.

To provide a place for members to gather and enjoy a variety of activities and services in an environment of respect and camaraderie; it's a place to call home.

We C.A.R.E.™ ... Compassion for families, increasing Awareness, influencing & funding Research, and promoting Education for metachromatic leukodystrophy, a very rare terminal genetic neuro-metabolic disease where over half the cases affect infants. We are very active in Rare Disease policy, newborn screening for MLD, and access & reimbursement for MLD & other rare diseases.

TO PROVIDE CARE AND HOUSING FOR DEVELOPMENTALLY DISABLED ADULTS. THIS INCLUDES, BUT IS NOT LIMITED TO MEDICAL TREATMENT, RECREATIONAL ACTIVITIES, A WORKSHOP PROGRAM, AND THE GENERAL WELL-BEING OF ALL CLIENTS.

THE MISSION OF THE ORGANIZATION IS TO ENHANCE LOUISIANA ORGAN PROCUREMENT AGENCY'S CAPACITY IN THE AREAS OF EDUCATION, OUTREACH, AND FAMILY SERVICES.

- Create awareness in the disorders associated with STXBP1 mutations - Fund Research to accelerate discovery of a cure - Provide families with tools to help them understand the disease & how to get involved - Advocate to improve early detection - Foster activism to help change policies in favor of orphaned diseases - Improve the lives of our STXBP1 Family

Movember is a month long global event in November where men grow moustaches to raise awareness and funds for men's health issues. Funds support world-class men’s health programs that combat prostate and testicular cancer and mental health challenges.

We are a unique coalition of affected families, respected clinicians, world renowned researchers, and engaged advocates working together to advance research, promote education, and offer support to those affected by amniotic fluid embolism (AFE).

The sole mission of Orphanos is to glorify Jesus Christ and serve His purpose on earth. Not excluding any opportunity Jesus Christ provides to glorify Him and serve His purposes, we commit to provide professional support services to our partners that enables them to provide direct childcare that is God-honoring and positively impacts the whole child and their families. Therefore, while utilizing organizational support systems that are modern and functioning properly, we will focus on providing these specific services to our partners:Money Care, Member Care, Ministry Care, Media Care.