Our psychosocial meetings for our patient members provide a couple of hours of respite, knowledge, understanding and an opportunity to meet someone else going through a rare condition or disease. Some are the actual patients, others are mothers, husbands, daughters, siblings or friends supporting a friend. We do not advertise these because they are private and personal events. But for all of you asking what we do… join us as a volunteer and see how you can help out our growing community #meaningfulhelp #volunteering #support #mentalhealth #empowerment #rarediseaseawareness