Hand in hand, day by day: The world marks the 8th Rare Disease Day, focusing on the daily lives of patients, families, and caregivers who are living with a rare disease.
This may sound strange to you, but did you know that the Philippines has been celebrating National Rare Disease Week on the last week of February since 2010?
Last week, we received this invite to celebrate the 6th National Rare Disease Week on Feb. 21-28 as the country joins hands with the rest of the world in marking the 8th Rare Disease Day with the theme “Living with a rare disease: day-by-day, hand-in-hand.” Over 80 countries participated in the celebration last year.
Since 2010, the last week of February (yes, after Valentine’s Day and this year, after Chinese New Year) has been declared as National Rare Disease Week in the Philippines by virtue of Presidential Proclamation 1989. Since then, the Philippine Society for Orphan Disorders, Inc. (PSOD) has been serving as the central coordinating organization for the Rare Disease Awareness Week campaign as it brings together healthcare institutions, local government units, government agencies, civic organizations, media and other private and public institutions to create awareness and support for Filipinos with a rare disease.
This year, the organizers are spearheading a stronger awareness campaign and batting for the early deliberation and passage of a Rare Disease Act currently sitting in the House of Representatives.
The campaign is aimed primarily at the general public and “seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.”
What are rare diseases? Because they’re so rare, even doctors often don’t recognize them. They’re so rare that only geneticists (genetics specialists) can identify them after a genetic testing is done.
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We cannot begin to fathom the depths of pain and despair parents go through when they find out their child was born lacking a certain gene that would help them live a normal, healthy life. But they live it, embrace it, and continue living and loving their sick child, hoping for the best but preparing for the worst.
This year, Rare Disease Day focuses on the daily lives of patients, families, and caregivers who are living with a rare disease (visit www.rarediseaseday.org for more info).
In Lebanon, the Lebanese Association for Neuromuscular Diseases is partnering with Kidzmondo to create a fun play day for children living with a rare disease. Of course, their parents are also invited to share in the fun — and find comfort in the fact that they’re not alone as they wage this bruising battle versus a rare disease.
In the US, the Dystrophic Epidermolysis Bullosa Research Association of America is funding reasearch and providing free services and programs for those with EB. Probably the worst disease you’ve never heard of, EB is a rare genetic connective tissue disorder that affects one out of every 20,000 live births in the US.
In Taiwan, the Taiwan Foundation for Rare Disorders helps rare disease patients get access to medical and proper care. Because rare diseases are mostly inherited diseases and could affect more than one member of the family, the foundation is working with the Taiwan goverment to put up a rare disease welfare system to protect the rights of patients with rare diseases and ease the financial burden of hospitalization and caring for them.
In the Philippines, there will be a run for rare (10k at 5 a.m., 3k at 6 a.m., and 1k at 6:10 a.m.) on Feb. 22 at Greenfield, Sta. Rosa, Laguna for the benefit of children living with rare diseases. Or to show your heartfelt support for the cause, you can buy tickets to the Valentine’s Day concert on Feb. 12, 8 p.m., Teatrino Theater of the Promenade, Greenhills, featuring Seasons of Love by the Angelos, a classical pop trio composed of George Sison Tagle, Rei Paolo Libiran, and John Louie V. Abaigar. Tickets are at P1,500 (for levels 1 and 3) and P1,700 (for level 2).
The PSOD invites everyone to go all-out (and all-blue, as you’ll find out a wee bit later) for the 6th National Rare Disease Week campaign. Be rare (as in extraordinary) and join in the Global Genes Project’s “Wear That You Care Campaign – Philippines.”
No, you don’t have to douse yourself with a bucketful of ice, as the Americans did — led by former Presidents, Hollywood celebrities and athletes — when they took up the ALS ice bucket challenge and showed an outpouring of support, raising some cool millions to fight the crippling and fatal Lou Gehrig disease (named after the hall-of-fame baseball player who was diagnosed with a motor neuron disease back in the 1930s). All you have to do is to wear your favorite blue jeans and a denim ribbon on your chest on Feb. 28. It won’t hurt to wear your heart on your sleeve, too.
