Current Programs
The HPS Network’s mission is to provide education and vital support programs to individuals and families with Hermansky-Pudlak syndrome while striving for improved care and innovative research on our journey to cure. To achieve this goal, the HPS Network is proud to provide creative and vital services for our community.
MEMBER SERVICES
NEW MEMBER CONSULTATION – Upon registering with the HPS Network one of our trained team members reaches out with a personal welcome. Additionally, a “Welcome Packet” is sent to provide resources to read and share with care providers. We also offer them the opportunity to give us their doctors’ and nurses’ addresses to send them a professional resource packet with information regarding care delivery.
MEMBER SUPPORT MEETINGS – The HPS Network holds monthly virtual member support meetings for adults and parents via zoom sponsored by the Lighthouse Guild. These meetings are held in Spanish and English and facilitated by our own social worker.
PATIENT FORUMS – The HPS Network offers and monitors online forums for members to interact and share information on Facebook, WhatsApp and Telegram. Telegram has a translation function that is very easy to use. We are delighted to invite our global HPS families.
Transplant Information and Peer Support (TIPS) PROGRAM – This extremely helpful program helps individuals facing lung transplants become better prepared for the journey ahead. Often individuals from Puerto Rico need to relocate to the mainland. Establishing a support network, understanding financial responsibilities, and managing medical procedures/appointments are thoughtfully presented in this valuable program.
MONTHLY MEMBER COMMUNICATIONS – We publish a monthly e-newsletter to all members highlighting new information, achievements and events.
TOWN HALL MEETINGS – In an effort to engage and communicate, once a month a ZOOM meeting is dedicated to updating the community with the work of the month. It provides information about interesting current research, efforts in collaborating with scientists, and reports of the activities of the leadership team.
BILINGUAL OFFICE – our office is ready to help. We can be reached by a Toll Free Number or email to provide support in both Spanish and English.
CONVENINGS – Each year, we host a Family Conference for three days in Uniondale, New York as well as a one day conference for families in Puerto Rico. We also host an annual science symposium held during the family conference in New York (see Meeting of the Minds below).
OUTREACH
ADVOCACY – The HPS Network works tirelessly to follow the issues that are important to our members. The most current information regarding these efforts can be found on our Policy & Legislative Advocacy page.
SPEAKERS BUREAU – The HPS Network is frequently lecturing and encourages opportunities for public speaking because outreach is a priority. We are invited to schools, hospitals, conferences, and health fairs to speak about genetics and the impact and incidence of HPS. We maintain this website and are available to answer e-mails regarding outreach opportunities on a daily basis.
EDUCATION – The Network sponsors an annual CME Medical/Education Day for clinicians in Puerto Rico. Also in the spring of each year the HPS Network’s New York office provides a graduate course for genetic counselors in training as part of the curriculum of Long Island University.
RESEARCH
MEETING OF THE MINDS (MOTM) – A highlight of our calendar is our annual medical symposium for the scientists/physicians that are actively involved in HPS research. The MOTM event is a hallmark of our research agenda which provides a venue of collaboration and innovation to advance HPS science and is the only one of its kind in the world.
RESEARCH PREPAREDNESS – We maintain a contact and symptom registry to assist with informing and networking individuals, recruiting for research trials and facilitating frequent communications. In 2024 we launched with the National Organization for Albinism and Hypopigmentation (NOAH) the Albinism International Databank. In addition, the HPS Network in collaboration with Vanderbilt University Medical Center maintains a bio repository for research regarding HPS Lung disease.
“VOICE OF THE PATIENT” REPORT – An Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting was held on June 10, 2022. This meeting was convened to provide a patient and caregiver perspective of the symptoms and burdens associated with HPS in daily life, as well as the massive unmet treatment needs experienced by those who live with HPS every day. The proceedings of this meeting are presented in the Voice of the Patient Report which may be used to guide therapeutic development and inform the FDA’s benefit-risk evaluations when assessing therapies to address HPS.
For more information on any of our programs, please contact us at info@hpsnetwork.org