Key Communication Messages
Put Vitiligo On the Agenda Now!
Here is, why:
- Nobody cares about the disease they know nothing about. Vitiligo deserves recognition from the WHO and the UN as a neglected disease with severe social consequences for over 100 million people, to raise global awareness and educate.
- No earlier progress in research is attributed to the lack of high-quality data, associated with the slow progressing disease. National support programs are required to collect country-wide statistics and data from electronic health registries.
- This complex disease requires multi-disciplinary approach. Collaboration of researchers from across the biomedical spectrum - including molecular biologists, dermatologists, immunologists, geneticists, - is required.
Key Target Groups
- United Nation's and World Health Organization's Agencies
- Politicians and policy makers at all levels – international, regional, national and local
- Insurance companies
- Health care professionals
- Scientists, Researchers
- Biotech companies and pharmaceutical industry
- Mass media
- Key opinion leaders, celebrities
- The general public
Please make sure you have received from the organizers printed materials or ready-for-print pdf files:
It's the story Michael Jackson never told. The most famous entertainer in the world suffered from a disease called Vitiligo. And even after his death it's still one of the most misunderstood things about the king of pop.
Sample Media Release and/or Newsletter
Vitiligo Q&A is now available in 6 languages
If you wish to adapt the posters to suit local requirements, you could request from us hi-resolution print files on a CD or via filesharing service with a brief note on how you intend to adapt and use the poster.
Planning is critical to the success of any outreach effort. Use these tips a guide to plan a successful World Vitiligo Day promotion event.
- Contact the VR Foundation or your local vitiligo support group several months ahead of time to request up-to-date information and materials.
- Meet with those who will be valuable in your event coordination, such as local businesses, local government agencies, key opinion leaders, healthcare organizations, and media partners.
- Recruit volunteers, speakers, and community liaisons.
- Develop new or adapt existing materials to distribute at the event. Be sure to get them mailed to you, printed and/or copied in advance.
- Conduct a run-through a few days before June 25.
- Develop a media outreach plan. Start by creating a local media list, including local access television, radio, newspaper, and community calendars.
- Send out a Media Release on around June 20-21.
- Post event announcements on your web site, Facebook, blog, Twitter and other social media pages. Encourage your partners, friends, contacts to post similar announcements.
- Post wall posters throughout the community: on bulletin boards at local community centers, places of worship, the library, post office, local schools, recreation centers, clinics, pharmacies, stores, and businesses.
- Make signs to direct participants and reporters to your place of action on June 25.
3. Engaging on June 25, the World Vitiligo Day:
- Make sure you have plenty of petition leaflets to sign.
- Set up tables and chairs, i.e. in your local community center.
- Create a sign-in sheet for members of the media.
- Ask people to sign leaflets with petition.
- Don’t forget the refreshments!
- Collect signed petitions, then either make photo copies and mail them to VR Foundation, or go to 25June.org and fill out the form on behalf of each participant.
4. Tracking Media Coverage:
- Follow up with reporters who signed in on WVD, and who responded to your online media releases.
- Do a basic free search for news articles based on your specific search terms and a date range. Some tracking services, such as Google Alert, will send automatic e-mail alerts to notify you when your event and/or keywords are mentioned.
- Consider using paid media tracking, which typically captures a wider range of media stories than free Internet search tools: both print and online, including archived pages, all forms of social media, video and image-sharing sites, forums, opinion sites, and Twitter.
- Be sure to share media coverage with your community partners, stakeholders, and all those who helped you plan and promote your event. Post a summary of media coverage on your organization’s web site. No matter the size or success of your event, remember that your efforts are key to educating the public about on this neglected disease.
Last but not least, share your feedback and results with us.
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
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