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 Rare Disease 2016

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medmisfit
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PostSubject: Rare Disease 2016   Mon Feb 08, 2016 2:52 pm

"Patient Voice" is the theme for this year because they want to recognize the importance of voicing our needs and advocating for change. It seems like a great opportunity to get involved and raise awareness for rare diseases!



In the US it's as easy as clicking a button! Click on the "Raise Your Hand" banner at http://www.rarediseaseday.us/ and Lundbeck will donated $1 to NORD's general research fund. You can also print the "Hands Across America" flier, snap a pic, and upload it with a bit of your story to their gallery at http://www.rarediseaseday.us/get-involved/handprints-across-america/ to raise awareness for IIH. You can find information for events in your area at the above links, if you'd like to get more involved.



EURORDIS sponsors Rare Disease Day in other parts of the world, so you can find local events at http://www.rarediseaseday.org. You can also "Raise and Join Hands" by uploading your pic to their gallery at http://www.rarediseaseday.org/join-your-hands. They also have materials and informational video in 24 languages that you can share on social media.



I challenge all of our members to make your voices heard this year! And, please post your stories to encourage other members to join you.

thank you
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PostSubject: Denim Dash Virtual 5k for Rare Disease   Mon Feb 08, 2016 3:33 pm

March 19th-27th the Global Genes Project is sponsoring the 2nd annual dash to raise funds for their RARE Patient Impact Grant. This is a virtual race, so you can run, walk, bike, swim, or roll any where or any time that's most convenient for you. They also give you an entire week to complete the 5k or you can ask people to sponsor you per mile. I personally am doing it by the .5 mile because I'm not sure how much I can physically do.

They also provide different levels of involvement for fundraising. You can join a team, create a team, or join as an individual. It's $35, but you get a t-shirt and other items for the run. Plus, it is considered part of your donation total. If you don't have the $35, you can also just sign up for fundraising. You can still join a team and create a page, but all of your donations come from friends and family sponsorships. There's no minimum, so I have friends supporting me at $1 per .5 mile..every little bit helps! You can also just make a flat donation, if you're not up for participating.

You can check out my page at http://www.crowdrise.com/julie-denimdash1. Join the Malady Miscreants, make a donation, or use it to get to the Denim Dash info and create your own team!
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PostSubject: Re: Rare Disease 2016   Mon Feb 29, 2016 3:45 pm

Happy Rare Disease Day!!! I have handed out my denim ribbons and sent my emails to raise awareness for rare diseases today. I'm just wondering if any of our members or guests are participating in any activities or doing anything to raise awareness for IIH??


We have informational guides and print outs at http://www.ihaveiih.com/f44-useful-guides-and-printouts or the Global Genes Project has different tool kits at https://globalgenes.org/toolkits/. Please take a minute to educate yourself or forward info to your family, friends, classmates, or co-workers today.

There are approximately 7,000 rare diseases affecting more people than cancer and AIDS combined. Only 15% of these diseases have a foundation or support network and only 5% have FDA approved treatments. This will never change if we continue to suffer silently, so I encourage you to raise your voice and advocate for change today!!!
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PostSubject: Re: Rare Disease 2016   Mon Mar 21, 2016 7:37 pm

It's not too late to support the RARE Patient Impact Grant! The Denim Dash 5k started on Saturday and goes through the 27th, so you still have plenty of time. If you'd like to make a donation or join a team, just follow the link to my page (http://www.crowdrise.com/julie-denimdash1).

The RARE Patient Impact Grant provides funding to disease-specific organizations enabling them to establish support networks and programs for people with rare diseases. Remember, only 15% of rare diseases have a formal foundation or support network in place, so this grant will enable organizations to develop supportive services for us.

If you'd like more information regarding the dash or grant, go to https://globalgenes.org/.
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