With this blog, PHA Medical Services staffer, Briana Rivas-Morello, concludes the story of PHA's World PH Day (and week!) travels. Here are her observations.
|Briana presents to conference attendees.|
Sociedad Latina de HP consists of representation by 16 Spanish-speaking organizations in Latin America and Europe. The Día Mundial de la Hipertensión Pulmonar event brought together patients, family members and medical professionals to network, learn from each other and, most importantly, become more empowered to fight the disease. It was fascinating to watch presentations ranging from basic PH diagnosis and management, to the complex psychosocial issues that patients may face and the best coping strategies for living with PH. In presentation after presentation, I watched patients and caregivers engage and truly empower themselves in their fight against the disease.
PHA in particular was invited to present on how to organize patient support groups and maximize community involvement. In the past decades, the PH community has grown tremendously, and this is no exception in the Latin American community. As these groups continue to increase in numbers and capacity, they are facing new challenges. Most groups, as PHA did a few decades ago, originated as patient support groups, organized by and for patients. As they grow, Latin American groups are now beginning to grapple with such questions as:
- In what ways can medical professionals become more involved?
- In what ways might government or health ministry officials become more involved?
- What can family members and friends do to help?
|Migdalia Denis, the president of Sociedad Latina de HP,|
presents Dr. Sandoval with his award.
While in Colombia, I was especially excited to see Dr. Julio Sandoval receive the first Sociedad Latina de HP medical excellence award. Dr. Sandoval, of the Instituto Nacional de Cardiología in Mexico, is a longtime partner of PHA, and it was an absolute privilege to see him win the award. As I watched him receive the plaque, I couldn't help but reflect that it was an absolute and tangible representation of what World PH Day is - unity and collaboration in the fight against PH. We are all working together, in all ways that we can, involving as many players as we can.
PHA is extremely excited to continue to partner with the Sociedad Latina de HP to provide support and education to all those living with PH. This partnership is particularly important as PHA continues to develop its Spanish educational content. At the end of 2013, PHA hosted its first Spanish webinar on www.PHAssociation.org/SalonDeClases, and the second Spanish webinar just about one month ago. I was able to share this event with attendees at the meeting and receive feedback on our Spanish programming which will better help us reach more patients' needs.
|Briana (left) and Yanira Polonia, a support group leader for the|
Dominican Republic group, visit a famous statue while
traveling in Colombia for the conference.