MANILA, Philippines — In the Philippines, persons born with and afflicted with rare disorders are a vulnerable and largely unsupported population.
A disease is considered rare if it affects 1 in 20,000 individuals or less, as defined by the Institute of Human Genetics of the National Institute of Health. Pompe disease, Maple Syrup Urine disease, Menkes syndrome, Lowe Syndrome are only a few of the registered 6,000-8,000 rare diseases globally. Because of the relatively low number afflicted by these disorders, support from the Philippine government is absent and access to basic health benefits such as insurance coverage is unavailable to patients with rare diseases.
Rare diseases in the Philippines
Statistics show that 1 in 20,000 Filipinos are afflicted with one of the 30 Rare diseases registered in the country, 75% of which affect children.
Without help from the government and private sector, treatment and medication is elusive for these patients due to their prohibitive cost and accessibility, most of which can only be sourced from the United States.
Formed with the help of the Institute of Human Genetics (IHG), the Philippine Society for Orphan Disorders, Inc. (PSOD), is a non-profit organization dedicated to be the central network for the advocacy and effective administration of sustainable support for the treatment and medication for rare disease sufferers.
Pairing up with Rare
In support of PSOD’s advocacy and efforts, Il Ponticello Cucina Italiana will be holding RARE PAIRS, a Charity Dinner and Wine Pairing fundraising event on November 22, 2014 to help fund and contribute to the growing needs of the increasing number Filipino patients afflicted with rare disorders.
“The advocacy to support patients with rare disorders is very dear and personal to me. With the lack of support from the government, it is our responsibility as private citizens to contribute and support this ignored and ‘orphaned’ sector of our society.” said Steve Magdaraog, Managing Partner of Il Ponticello.
For the 5-Course Wine Pairing Dinner, Il Ponticello partnered with premier wine distributor, Antique Wines Company (AWC), to develop a unique menu pairing gourmet Italian dishes with rare wines currently not available in the Philippine wine market sourced from select, boutique Chateaus around the globe. Proceeds of the event will go directly to PSOD to help fund for the ongoing treatment, medication and counselling for patients with rare disorders. – Rappler.com
For inquiries & reservations, contact 553-9971. Il Ponticello, 2F Antel Corporate Center 121 Valero St. Salcedo Village, Makati.