What We Do

Advocacy Day 2022

The leadership of the Puerto Rican Association of Hemophilia and Bleeding Conditions, along with more than 20 members of the community, gathered at the Capitol to advocate for the rights and needs of our patients. The second “Advocacy Day” was held on May 18, 2022 with the support of the National Hemophilia Foundation and was part of our “Alza Tu Voz" [Raise Your Voice] advocacy program. That day we managed to meet with the offices of several legislators in order to present our stories, needs, requests and recommendations to achieve better care for our population. Here is a list of the successful meetings we had:

Oficina del Senador José Luis Dalmau (Senate President)

Oficina de la Representante Mariana Nogales

Oficina del Senador Thomas Rivera Schatz

Oficina de la Representante Sol Higgins

Oficina de la Senadora Rosamar Trujillo

Oficina del Representante José Manuel Ortiz

Oficina del Senador José Vargas Vidot

Dra. Marilú Cintrón - Puerto Rico Health Department

In addition, we had an advocacy workshop in the legislature with Mr. Erick Vázquez, who was of great help to start the day's work. On the other hand, we thank and acknowledge our patients and their families who were present to tell their stories first-hand, which is a gesture of courage and empowerment. Without a doubt, it was a very productive day for APH and for the entire bleeding disorders community. Remember, each one of you can join our efforts and advocate by becoming part of this political process; by visiting and writing to your legislators to tell your stories and voice your needs. It is extremely necessary, now more than ever, to raise our voices to continue and promote better conditions for everyone on the island. If you want to educate yourself on how to advocate, join the “Alza Tu Voz” program so that together we can develop strategies to continue making progress for our community. Check out our Facebook album with great pictures of that day!

#DeRojoPorLaHemofilia

On World Hemophilia Day, April 17, we celebrate this campaign which invites everyone to wear red that day, take a photo and post it on social media with the hashtag #DeRojoPorLaHemofilia. This campaign is intended to create interest in this bleeding condition. In 2022 we managed to sell hundreds of red shirts in P.R. and in the U.S.A. We managed to get the Government of Puerto Rico to recognize this day by lighting La Fortaleza and the Puerto Rico Capitol in red on that night. Everything was a huge success! Visit our Facebook page to see all the photos.

Advocacy

APH is committed to encourage positive changes towards the bleeding disorders community in Puerto Rico. Our Board members have met legislators (From the House and Senate of P.R.) and government agencies directors with the purpose of advocating for our patients and their rights. It’s our duty and responsibility to promote changes that results in better healthcare services and an overall superior quality of life. IF you want to become an advocate for this community and wish to join us in our efforts please email us!