Fulcrum Therapeutics Joins in Effort to “Reframe Rare” to Commemorate Rare Disease Day 2020
Company to participate in MassBio presentation and sponsor social media campaign designed to highlight the many ways we can change perceptions of rare diseases
CAMBRIDGE, Mass., Feb. 28, 2020 (GLOBE NEWSWIRE) -- Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today announced the company’s support for Rare Disease Day 2020 and the importance of changing perceptions about rare diseases that continue to make patients and families feel isolated and unable to access information and support.
“In our work developing therapies to treat genetically defined rare diseases, including facioscapulohumeral muscular dystrophy (FSHD) and sickle cell disease (SCD), we have met with so many patients and caregivers who share their challenges in accessing information and support for a rare disease,” said Robert J. Gould, Ph.D., president and chief executive officer of Fulcrum Therapeutics. “We applaud EURORDIS, the organization who created Rare Disease Day, for highlighting the need for all of us to take steps to ‘Reframe Rare’ in the years ahead.”
To commemorate Rare Disease Day 2020, Fulcrum sponsored a campaign throughout the month of February honoring patients and families and inviting them to share their perspectives about the best ways to change the dialogue about rare diseases. Their insights including photographs and quotations were shared on the company’s Instagram, Twitter and LinkedIn profiles. Members of the Fulcrum team also presented their thoughts on the best ways to support patients and make a difference for people affected by rare diseases. In addition to the social media campaign, Dr. Gould and one of Fulcrum’s patient advocate participants will participate in a panel discussion during the MassBio program on Rare Disease Day to be held at Omni Parker House in Boston.
“People have so many misconceptions about rare diseases – if they know about them at all. The effort to build awareness and change attitudes about these diseases can have a very positive impact on patients and families all around the world,” said Lexi Pappas, FSHD patient advocate. “I am glad to be able to share my experience with the team at Fulcrum and to join in their efforts to help reframe discussions about rare diseases in ways that can lead to better treatment and support.”
Established by EURORDIS in 2008, Rare Disease Day is recognized on the last day of February each year to raise awareness of rare diseases and their impact on patients, caregivers and communities. This year, Rare Disease Day falls on February 29 and will focus on reframing what it means to be rare by promoting the message that “rare is many, rare is strong and rare is proud.”
Fulcrum Therapeutics invites all people who support families affected by FSHD, SCD and other rare diseases to join in the effort to build awareness by using the hashtags #RareDiseaseDay, #ReframeRare, #FSHD, #SCD and #SickleCellWarriors on social media during Rare Disease Day.
About Fulcrum Therapeutics
Fulcrum Therapeutics is a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases in areas of high unmet medical need. Fulcrum’s proprietary product engine identifies drug targets which can modulate gene expression to treat the known root cause of gene mis-expression. The company has advanced losmapimod to Phase 2 clinical development for the treatment of facioscapulohumeral muscular dystrophy (FSHD) and has completed extensive pre-clinical research for FTX-6058 for the treatment of sickle cell disease and beta-thalassemia.
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