FSHD and Rare Disease Day

Celebrate Rare Disease Day on February 29th!

Rare Disease Day takes place annually on the last day of February, a month known for having a rare number of days. On February 29^th, people around the world will gather to increase knowledge about rare diseases and how they impact patients’ lives. Rare Disease Day promotes awareness to the general public as well as decision makers, industry representatives and researchers.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. According to RareDiseaseDay.org, 1 in 20 people will live with a rare disease at some point in their life.

FSHD-a Rare Disease

The National Organization of Rare Disorders (NORD) recognizes Fascioscapulohumeral Muscular Dystrophy (FSHD) as a rare disease. An estimated 1 in 8,000 individuals, or 870,000 people worldwide are affected.

FSHD strikes men, women, and children of all races and ethnicities. No individual or family is immune. Although a rare disease, FSHD is considered one of the more common hereditary muscular disorders.

While having a rare disease like FSHD can feel isolating at times, no one is alone.  There are many resources available through the FSHD Society, our network of local chapters, the Walk & Roll to Cure FSHD and other fundraising event, and our many Facebook pages and groups.

As a member of the FSHD army of activists, please consider taking a moment this upcoming Rare Disease Day to share your story, encourage others to share their stories, use our toolkit to be a social media ambassador or get involved in your own creative way.  Continue to spread awareness, every day.

Rare Disease Day brings a great opportunity to let your voice be heard. And another important opportunity to raise your voice is just around the corner. The FSHD Society is facilitating the Voice of the Patient Forum with the FDA with a goal to educate the FDA on how FSHD has impacted your life.  Everyone- patients, family members and friends are encouraged to get involved.

The time is now to celebrate you- your courage, your strength, your uniqueness.

Show your Support

How will you show your support this year?

• “Reframe Rare”

Would you be willing to share a wish, a hope, or a goal about how you’d like to see FSHD reframed for the future? Let us know if we have your permission to share your quote and photo through our social media channels by including @FSHDSociety or send your quote right to us.

Some questions to ask yourself while creating a quote:

• • What would I want to be different or reframed for the FSHD community? (Is it disease understanding, access to treatment, support for research, appreciation for the burden of living with a rare disease, etc.)
  • What do I wish people knew about FSHD?
  • What is your hope for the future for caregivers, researchers, or patients?

• Take Action
  • Attend one of nearly 100 events worldwide
  • Educate others about FSHD.
  • Add your voice to the many weighing in on our Voice of the Patient surveys. Your answers will be compiled with all the others and presented to the FDA in a comprehensive report.
  • Be a social media ambassador! Like, comment and share our posts on Facebook, Instagram and Twitter. See sample posts below, and if you can, make them unique for you.
  • Plan now to be a part of the signature fundraising event for FSHD, the Walk & Roll to Cure FSHD, or other local Chapter Events.

Sample Tweets:

• Rare is many. Rare is strong. Rare is proud. I am rare. #RareDiseaseDay #FSHD #CureFSHD
• An estimated 1 in 8,000 individuals are affected with FSHD worldwide. No individual or family is immune. #RareDiseaseDay #FSHD #CureFSHD
• Be a part of the army of activists participating this #RareDiseaseDay to raise awareness for #FSHD.

Sample Social Media Posts:

• Did you know that rare is many worldwide? An estimated 300 million people live with a rare disease.  Approximately 870,000 of those are affected with FSHD. #RareDiseaseDay #FSHD #CureFSHD
• An estimated 72% of rare diseases are genetic.  FSHD is a genetic disorder, but 30% of new FSHD patients have no prior family history. #RareDiseaseDay #FSHD #CureFSHD
• Raising awareness for rare diseases is an important step in the journey.  But one day is not enough, we need to continue to share our experiences to educate others.  #CureFSHD #VOPF #RareDiseaseDay

Graphics:

Right click on the image you want to use and select “Copy image…” from the dialogue box that pops up.

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