Helping you share your story is what World FSHD Day is about, and giving patients a voice in the development and delivery of FSHD therapies is what Project Mercury is all about.
If your life is impacted by FSHD, you hold a unique and important perspective. When you share your story openly and authentically, it has a lasting impact:
- Connect with other patients: Sharing your experience can help others with FSHD feel less alone and more informed.
- Promote better healthcare: Patient experiences can provide valuable feedback to healthcare providers, researchers, and policymakers.
- Raise awareness: Sharing your experience will raise public awareness about FSHD, which can lead to increased funding for research and improved access to care.
- Empower yourself and others: When you share your experience, you take more control of your FSHD journey. This can lead to improved patient outcomes and a stronger sense of community for all who live with FSHD.
- Shape the development and delivery of therapies. Sharing your lived experience with FSHD has a dramatic impact on drug development, drug approval and drug reimbursement.
Every year on June 20th, we celebrate World FSHD Day with our Orange Slice Selfie campaign. Across the globe, individuals and families impacted by FSHD take to social media to share their Orange Slice Selfie and tell their FSHD story.
Project Mercury is a patient advocacy-led and patient-centric global initiative to speed the development of therapies and ensure patients can access effective therapies once approved. Sharing your story on World FSHD Day, and every day, is critical to success!
Celebrating World FSHD Day
Click on the interactive map below to see how countries around the globe are participating in World FSHD Day.
Canada – British Columbia ChapterCelebration Gathering
Contact: Priscilla Sharun
CLICK HERE for Info 1 of 13
United StatesPromoting the Orange Slice Selfie Campaign and Facebook Challenge
Contact: Erin Saxon, firstname.lastname@example.org
Promoting the Orange Slice Selfie Campaign and Facebook Challenge – FSHD Radio Podcast dropping a new interview each hour, all day long – free download of FSHD Day toolkit – CLICK HERE for Info 2 of 13
Contact: Haviva Ner-David, email@example.com
We are just encouraging our members to raise money and awareness on social media. 3 of 13
RussiaContact: Aysylu – firstname.lastname@example.org 4 of 13
ChinaContact: Baisheng Ning. email@example.com
We plan to release the China FSHD Patient Voice Report on June 20 and mail it to patient groups, hospital doctors, companies and other parties to raise awareness of FSHD disease. 5 of 13
BrazilContact: Fabio Figueiredo 6 of 13
ChileContact: Macarena DÃaz Ubilla, firstname.lastname@example.org
Hi! We are just starting our first national FSHD Fundation and on June 20th we’ll have a small meeting to encourage our local patients to join. 7 of 13
South AfricaContact: Gerda Brown – email@example.com
A member affected with FSHD will share their journey and posted on our MDFSA Facebook page, as well as YouTube channel. Raising awareness about MDFSA on social media as a “build up” to 20 June. Hosting a webinar on 24 June regarding FSHD, exercise and nutrition. The speaker is Mark Tarnopolsky. 8 of 13
ItalyFSHD Italia Aps is organizing the World FSHD day
Paola De Donato – firstname.lastname@example.org
FSHD Italia Aps is organizing the World FSHD day, that will take place in Rome at Policlinico Gemelli. During this event, patients, doctors and resarchers ( prof. Enzo Ricci, dott. Giorgio Tasca, dott. Monforte and many others) will discuss several topics, in including research and trials, in order to raise awereness.
CLICK HERE for Info 9 of 13
Eva Alvarez, email@example.com (primary World FSHD Day contact)
We plan to create awareness about FSHD in social media during the month of June, advertising June 20th through specific reels and posters. We will start a funding campaign in Facebook, deliver press releases to media companies, promote “orange slice,” launch a campaign to recruit new members, and develop a new infographic design on FSHD.
CLICK HERE for Info 10 of 13
IndiaFSHD India Foundation
firstname.lastname@example.org 11 of 13
ChileAsociación Dimus Chile
Igor Navarrete – email@example.com
Distribute information and education about FSHD through brochures and videos on our social networks along with psychological accompaniment talks to patients and family.
CLICK HERE for Info 12 of 13
AustraliaIt’s TIME for Lunch” panel discussion and luncheon event
Contact: Emma Weatherley – firstname.lastname@example.org
FSHD Global Research Foundation is hosting our annual “It’s TIME for Lunch” panel discussion and luncheon event on 16 June to kickstart our fundraising efforts for World FSHD Day. We also have our community members hosting morning teas and local events to celebrate. We have encouraged our community to share photos and stories with us.
CLICK HERE for Info 13 of 13