HERMANSKY PUDLAK SYNDROME NETWORK INC
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Mission Statement
The Hermansky-Pudlak Syndrome Network is a 501c3 advocacy organization providing support, education and hope to individuals and families affected by Hermansky-Pudlak Syndrome. We promote and fund research, create and disseminate educational materials, and host conferences and medical forums for our quest for a treatment and our dream of a cure.
About This Cause
The Hermansky-Pudlak Syndrome Network is a 501c3 advocacy organization providing support, education and hope to individuals and families affected by Hermansky-Pudlak Syndrome. We promote and fund research, create and disseminate educational materials, and host conferences and medical forums for our quest for a treatment and our dream of a cure. The Description of Current Programs and Activities Outreach – Reaching out to individuals and families struggling with this difficult disease is a primary focus. Dealing with a rare disease can be isolating and terrifying for families and we need to reach all concerned. National directories and affiliations help us get the word out. We also attend numerous medical conferences, present posters and give presentations to hospitals and healthcare providers. Much emphasis is placed on outreach to geographic areas with a high concentration of people of Puerto Rican decent. HPS Family Conferences – We organize annual conferences for families affected by HPS as well as doctors and researchers interested in the syndrome. For many, this is the only time they are able to interact with other families dealing with this isolating disease. It also provides a relaxed environment where doctors can sit with families and answer their questions. The conferences provide a venue for bench researchers, who might not have ever seen a person with HPS, to appreciate the importance of their work. Attendance at the conference is greater than 250 and grows about 20 percent a year. Many families cannot afford to attend so a large number of scholarships are provided. These conferences take place in New York and Puerto Rico. HPS Database – We maintain a patient contact registry with information from all of our members. When a new parent or caregiver calls for information, we take a phone intake to determine their specific concerns as well as their level of understanding. We send out a mailing of information to the family and any individuals that the family might deem information necessary. These might include their pediatrician or school nurse. HPS Research - The Network makes families aware of several research opportunities at the NIH. We recruit for the following protocol: The Basic Investigation of HPS – this study is to understand how the symptoms of HPS relate to the different genetic mutations of HPS (HPS 1 – HPS 9) The HPS “Network News” – this hardcopy magazine informs families about research developments, as well as other information about the HPS Network community. The HPS eNews Blast-The HPS Network sends out bimonthly e-blasts to the HPS community informing them of ongoing and upcoming events in the HPS Network. HPS Network listservs – The HPS Network maintains and moderates two listservs, one for adults with HPS and one for parents and families of those affected by HPS. HPS Support Group Conference Calls-English and Spanish conference calls are conducted on Wednesday evenings to provide support to members. They are facilitated by a social worker and professional counselor. HPS Network Website – We maintain both an English and Spanish language Web site. www.hpsnetwork.org / www.hermansky-pudlak.org HPS Social Networking-Facebook and Twitter- FaceBook.com/HPSNetwork, Twitter.com/HPSNetwork HPS Athletic Club- This active group educates members about need for exercise and activity. They encourage members to host fundraising sporting events.