When managing a rare disease, easing the symptoms of the disease itself are only one part of a therapy. Strengthening the emotional health and quality of life for both patients and families is often equally important. Recently, there has been a deepened understanding of the value of complementary therapies aimed at helping patients and families cope with symptoms or the effects on emotional health of rare diseases. There are many different types of complementary therapies such as yoga, meditation, massage therapy, expressive therapies such as art or dance or music and recreational therapies such as horseback riding, swimming or other adventure programs. This session will provide an overview of these modern therapy approaches, how they may help and resources for trying them.
Speaker: Laura Fonseca, MT-BC, Clinical Director and Music Therapist, Meli Musi
Speaker: Lucy Wong, Sclerodoma Patient Advocate and Artist
Speaker: Jon Miller, Co-Founder and President, Network of Tyrosinemia Advocates
Speaker: Amanda Miller, Co-Founder and Board member, Network of Tyrosinemia Advocates
Day 2, Track 1