A Story of Rare Disease Activists

Celebrate the patient voice for Rare Disease Day with perspectives from activists, including My Normal founder Emma Rooney, on what it means to live with a rare disease and advocate on behalf of the community.

12 activists share what they want you to know about living with a rare disease https://t.co/P3Lk3ZDnxx pic.twitter.com/GQE7YRnPdD

— Mashable (@mashable) 29 February 2016

Storify: Do stories change anything?

If you missed taking part in the February 3rd #hcsmca Twitter Chat on storytelling + preparing for Rare Disease Day, or you're looking for a recap of the lively session, visit the event storify. It offers a great capture of why patient stories are so important and some of the challenges we must overcome to guarantee we are making the most of what stories have to offer. You will also find links to a number of relevant resources shared by participants.

@drpauldempsey 20 years ago, my story didn't matter, I was told what to do. I love the change now since I'm asked what I need next. #hcsmca

— Martin R. Lemieux (@martin_lemieux) February 3, 2016

Chat contributors fully embraced the topics up for discussion:

• T1. How do patient stories impact the rare disease community? 

• T2. How can we better value patient stories and respond to the insights shared? 

• T3. What benefits should patients look for from contributing their stories? 

• T4. What stories are missing from the rare disease community and how can we encourage different voices?

Full chat transcriptions also available from #hcsmca
Do stories change anything? #hcsmca storify

Rare Disease Day Movie Pick

Less than 20 days to go, we're on countdown until Rare Disease Day 2016. The 2016 official video has now been released and it reminds us that while the goal of Rare Disease Day is to draw awareness to the plight of people living with rare diseases, it's also an important time to celebrate the voices of the rare disease community. Don't miss this year's production starring pianist Elisa, who lives with Williams Syndrome, and her family. If you're searching for a movie for Valentine's Day, also look out for the French Canadian romantic film Gabrielle. The film's leading lady, Gabrielle Marion-Rivard, also lives with Williams and brings this rare story to the big screen with a charming performance.    
  

#hcsmca Twitter Chat: Do Stories Change Anything?

Full story published on the blog for Health Care Social Media Canada (#hcsmca)

Join the #hcsmca weekly chat on Wednesday, February 3^rd at 1pm ET (time zone converter) to discuss how stories can change things.

In the chat we will cover:

• T1. How do patient stories impact the rare disease community?
• T2. How can we better value patient stories and respond to the insights shared?
• T3. What benefits should patients look for from contributing their stories?
• T4. What stories are missing from the rare disease community and how can we encourage different voices?

Learn more about this #hcsmca twitter chat: Preparing for #RareDiseaseDay: Do stories change anything? by Emma Rooney (@blumencasey)

Find Rare Disease Patient Stories

We've started a list of Rare Disease Patient Stories from around the world. Help get ready for Rare Disease Day by visiting the list and adding your suggestions.

Rare Disease Patient Stories

View more lists from Emma Casey Rooney

Hearing Pictures: Narrative Medicine Rounds with Positive Exposure

Even without seeing any of Rick Guidotti's portraits, you'll be moved by hearing him talk about his photographic journey, from top fashion photographer to starting Positive Exposure, in order to move viewers to see beyond diagnosis. You can hear the lecture on iTunesU from Narrative Medicine Rounds. Follow up listening with a visit to the Positive Exposure gallery to see if you can spot any of the photo images so beautifully described through Guidotti's storytelling.

Guidotti also lent his support to #RareButReal2015 as a judge for the EURORDIS Photo Contest. Be sure to check out the recently announced winners! You can also share your own photo stories for Rare Disease Day 2016.

Find Tips for Sharing Your Rare Disease Day Story

Rare Disease Day is coming up, February 29th, 2016. This is a great time of year to join together with others from the rare disease community all over the world and contribute your rare disease story of what it means to live with a rare disease. Fittingly, the theme for this year's event is patient voice.

If you are looking for tips on how to share your story with impact, especially using social media to spread your message, watch these two recent webinars:

• RARE Webinar: World Rare Disease Day 2016 Planning presented by Global Genes

• Maximising Social Media around Rare Disease Day presented by RareConnect, EURORDIS 

You can contribute your story to the official Rare Disease Day Website or visit the My Normal Resources Page for a full list of places to share your rare disease story online.

Storytelling Tips - December 17

Tips for Sharing Your Patient Story with Pharma

View more lists from Emma Casey Rooney

Storytelling Tip - November 23

"There are people with narcolepsy all over the place. 1 in every 2,000 people have narcolepsy. So it's really not that rare but it's invisible...By me telling my story, other people realized that they weren't alone either. See, we don't always have a cure for the diseases, but we do have a cure for the loneliness today," says Julie Flygare, the founder of Project Sleep & author of Wide Awake and Dreaming: A Memoir of Narcolepsy. Julie's tip from experience,

"Prescribe another patient."

-Julie Flygare, Stanford Medicine X 2015

If you could be that patient, that shares your health story to support others in feeling less isolated, try Julie's storytelling advice, "Begin Anywhere–Just Begin." Julie offers her perspective and other practical suggestions in the Using Storytelling to Raise Awareness for Your Rare Disease RAREToolkit.  

social media & storytelling influencing therapy development

When asked by RARECast host Daniel Levine, what's driving the current significant interest of therapeutic developers in rare diseases, here's what Michelle Berg, Vice President of Patient Advocacy at Abeona Therapeutics, had to say, regarding the role of social media and storytelling:

“Parents and patients have of course always been passionate about finding answers and raising awareness for their particular rare disease. They finally now have a strong platform for distributing their messages, loudly and swiftly, through social media and the internet. I think it’s given them a much better way to connect as a community, and as importantly, has put faces, voices, and stories in front of a global audience. It’s become really as simple as a click of a button for people to share, to donate or otherwise show their support. And so, this I feel, has empowered foundations and individual families to raise large amounts of money and put that towards research programs.”    

You can listen to the full story on the RARECast by Global Genes.