4^th National Rare Disease Week

With the release of Presidential Proclamation No. 1989 on February 8, 2010 declaring the last week of February as ‘National Rare Disease Week’, there is now an increasing awareness and participation from both government and private to support this marginalized population. But public awareness remains low.

Thus, the Philippine Society for Orphan Disorders aims to have a stronger awareness campaign for the general public in 2013 with the 4^th National Rare Disease Week theme “Rare Disorders Withour Borders” by involving all relevant stakeholders such as relevant government agencies, healthcare institutions, local government units, non-government organizations, the media, and other private and public institutions in the campaign.

Our appeal

We are enjoining private and public institutions to be a partner in the awareness campaign on the 4^th National Rare Disease Week campaign by conducting any or all of the following:

1. Display of tarp/s in high traffic areas within the vicinity of your institution

2. Display of posters on your announcement boards

3. Display of e-poster on your website

4. Screening of PSOD video/s on rare disease awareness in your waiting public viewing areas or electronic billboards

5. Screening of awareness videos on rare disorders

6. Organizing orientations and other activities on rare disorders

7. Distribution of brochures

8. Announcing about the 4^th NRDW during flag ceremony ant airing “Lalaban Kami” music

Organizations are also enjoined to be part of “Walk for Rare” on Feb 22, 2013 (venue to be announced).

In February 2012, over 50 private and government agencies, hospitals and medical institutions, non-profit organizations, schools and volunteer groups joined the Philippine Society for Orphan Disorders, Inc. in the 3^rd National Rare Disease Week and 5^th World Rare Disease Day awareness campaign.

This year, we are once again enjoining more private and public agencies to be in solidarity with PSOD and the international rare disease community by taking part in the nationwide awareness campaign and the promotion of the welfare of Filipinos afflicted with rare disorders by initiating the celebration of the 4^th National Rare Disease Week and 5th World Rare Disease Day.

PSOD is also calling for the inclusion of rare diseases in the national health insurance and increased public-private partnerships for better healthcare, social services, and other support for individuals with rare disorders.

Other than these, PSOD shall also conduct the following:

 

 

For more info, visit www.psod.org.ph or contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it or +63 661 8935.

Rare Disease Day 2013: a worldwide campaign

Rare Disease Day was first launched by European Organisation for Rare Diseases (EURORDIS) and its Council of National Alliances in 2008 where more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 63 other countries participating in 2012.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients‘ lives. The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. (From EURODIS Rare Disease 2013 Info Pack)

2013 Theme: RARE DISORDERS WITHOUT BORDERS

Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation.

Patients and their families who feel isolated because of the rareness of their diseases should know that there are more than 6000 rare diseases affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating. They affect people in similar ways. Reaching out across borders can help them find common solutions and remind them they are not alone.

Advances in rare disease research have more chances of succeeding if sought after internationally when hundreds of teams of researchers from different countries work together to understand the disease and find therapies. Financial resources for research will go further if pooled with other funding from various countries: This is the idea behind the International Rare Disease Research Consortium (IRDiRC).

Policies in healthcare and social services which have proven beneficial to people living with rare diseases in one country should be standardised and replicated internationally. This is the idea behind the European Union’s call for countries to develop National Plans for Rare Diseases in all Member States by the end of 2013.This initiative is intended to improve coordination of rare disease policies at the national level – following a common road map – and then to harmonise them across Europe.

The theme for 2013 reminds us that looking at rare diseases from an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.

“There are over one hundred million people

living with a rare disease around the world.

Take down borders, for rare disorders.

Show your solidarity today!”

(From EURODIS Rare Disease 2013 Info Pack)

We aim at extending this sense of solidarity to society at large.

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