Advancing treatments for rare diseases together

November 2021

22Nov

Sharon Terry, EspeRare’s President and CEO of Genetic Alliance and Ryan Taft, PhD, Vice President, Scientific Research at Illumina, Inc. announced the creation of the iHope™ Genetic Health program aiming at providing whole-genome sequencing access (WGS) to tens of thousands of patients across the globe. This flagship program will enable clinical laboratories and care centers throughout the world to test patients impacted by rare disease and other genetic health conditions.

"Since our inception in 1986, Genetic Alliance's mission has been to realize a world in which those affected by genetic disease are diagnosed and offered interventions to alleviate their suffering," said Sharon.

“We have a moral imperative to help genetic disease patients who need a diagnosis,” said Ryan Taft. “iHope Genetic Health will change the trajectory of genomic medicine worldwide, helping patients who may have otherwise been invisible”. 

To view the press release, follow the link.

About Illumina and Genetic Alliance

Illumina is improving human health by unlocking the power of the genome. Their focus on innovation has established Illumina as the global leader in DNA sequencing and array-based technologies, serving customers in the research, clinical and applied markets. To learn more, visit www.illumina.com

Genetic Alliance, a non-profit organization founded in 1986, is a leader in deploying high tech and high touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health. For more information, visit geneticalliance.org

16Nov

On 15th November 2021, the EspeRare Foundation and the Pierre Fabre Group announced the start of the EDELIFE clinical trial aimed at confirming the safety and efficacy of ER-004, a prenatal treatment for XLHED (X-linked Hypohidrotic Ectodermal Dysplasia), a rare and debilitating congenital disease. Upon positive results, the study could lead to the first approved treatment for XLHED by 2026. The University Hospital of Erlangen in Germany is identified as the first clinical site where the study starts with Prof Schneider as the study coordinating investigator. 

"Starting patient enrolment in the EDELIFE clinical trial is a huge milestone for the Hypohidrotic Ectodermal Dysplasia community," said Caroline Kant, the Co-founder and CEO of the EspeRare Foundation, the primary sponsor of the study. According to Eric Ducournau, CEO of the Pierre Fabre Group; "The EDELIFE study truly exemplifies Pierre Fabre's commitment to supporting those with rare dermatologic diseases as we have already done in infantile hemangiomas". 

To view the press release please follow the link.