HomeLatest imagesRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Rare Disease Day 2019

View previous topic View next topic Go down 
AuthorMessage
medmisfit
Admin2
Admin2
medmisfit


Rare Disease Day 2019 Empty
PostSubject: Rare Disease Day 2019   Rare Disease Day 2019 I_icon_minitimeMon Feb 11, 2019 10:33 pm

Ok y'all, Rare Disease Day is fast approaching (Feb 28th). They're doing the "Show Your Rare" campaign again this year. If you saw posts from last year, it was a really fun, fairly inexpensive way to get involved. NORD added #ShowYourStripes to the US campaign, so I thought it was time to get my zebra back up.

You can get more info on the Show Your Stripes campaign here https://rarediseases.org/rare-disease-day for the US or Show Your Rare here https://www.rarediseaseday.org/article/show-your-rare for World Rare Disease Day. These links will also give you an opportunity to look for other ideas and awareness activities in your area.

Global Genes also has information at https://globalgenes.org/world-rare-disease-day/. #CareAboutRare is their slogan this year and they offer signs that you can print for social media pics. Wear that You Care is probably the easiest form of awareness because you just wear denim jeans or ribbons on Rare Disease Day. They use denim because 80% of rare diseases are in our genes. They will provide you with ribbons for free and have all sorts of stickers, pins, etc for purchase. They also have a virtual race to raise money, if you're able to swim, walk, run, or wheel. It's a great organization, especially for kids with rare diseases, so I encourage you to check them out!

This year's theme is "Bridging Health and Social Care". They're focusing on bridging the gaps between medical, social, and supportive services. It's what we do here and so, so important for the rare community because there's limited access to appropriate care, all sorts of misconceptions and inaccurate information, isolation, financial burdens, etc. This is our chance to get involved and make our voices heard, so I encourage you all to find some way to participate or ask a friend or family member to do something on your behalf.. together we're strong!
Back to top Go down
 

Rare Disease Day 2019

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Donations Fundraising and Awareness :: Fundraising, Research and Raising Awareness for IH-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | ©phpBB | Free forum support | Report an abuse | Forumotion.com