Ehlers-Danlos National Foundation Welcomes Lara Bloom to Board of Directors

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Lara Bloom to Serve on EDNF Board of Directors as International Liaison to Advance EDNF’s Global Reach

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I look forward to serving on the EDNF board as an International Liaison, to join together efforts being made in the US and UK.

The Ehlers-Danlos National Foundation (EDNF) is proud to welcome Lara Bloom, COO, Ehlers-Danlos Support UK (EDS UK), to its Board of Directors as an International Liaison. Bloom will form the link between EDNF activities in North America and the Ehlers-Danlos syndrome (EDS) medical and patient community in the United Kingdom.

Bloom was voted onto the EDNF board on September 4th, and will be in attendance at the next EDNF meetings November 14-15, 2014 in McLean, Virginia. EDNF and EDS UK have a history of affinity and support each other’s events. EDS UK annually sends representatives to EDNF's Annual Conference, and Shane Robinson, EDNF executive director, and Sandy Chack, EDNF board chair, plan to attend the EDS UK conference October 24-26, 2014. With Bloom on the EDNF board, the two organizations can officially collaborate on global projects.

“We are thrilled to welcome Lara to the EDNF board of directors, and forge an official relationship with EDS UK,” said Robinson. “The two organizations have similar missions and we feel we can get more accomplished in the global fight against EDS through collaboration.”

Bloom has been working with the EDS UK charity for over four years trying to make the invisible visible for those with EDS. Bloom became the first person with EDS to complete the London Marathon in 2011 by walking the distance in eight hours and 18 minutes. She fractured her foot on the 13th mile, but continued to the finish line, raising over £10,500 for EDS UK. A documentary was made following her journey called "Issues with my Tissues" which premiered in the US at the 2014 EDNF Annual Learning Conference this past July.

“As a sufferer of EDS myself, I always keep to the forefront of my mind why it is important to be a member of the EDS UK charity, and I try my best to deliver upon this personal mission on behalf of all who suffer from EDS.” said Bloom. “I look forward to serving on the EDNF board as an International Liaison, to join together efforts being made in the US and UK.”

About Ehlers-Danlos National Foundation (EDNF): EDNF is the leading authority for Ehlers-Danlos syndrome (EDS), a group of genetic connective tissue disorders. To support research and education about EDS to prevent disfigurement, crippling, and premature death through early and accurate diagnosis, EDNF increases awareness about EDS by fostering and funding research, generating and distributing accurate and responsible information, and delivering recommendations for those seeking diagnosis of problems that have been a life-long mystery. EDNF also provides support to those who have been diagnosed with EDS by offering information and emotional validation for the newly diagnosed wrestling with what a genetic disorder means for them and their families, and provides tips for those who have lived with EDS for years, including day-to-day inspiration and news. EDNF’s members are physicians and other medical practitioners, researchers, people with EDS, and friends. For more information, visit

About Ehlers-Danlos Support UK (EDS UK): EDS UK was established in 1987 to support, advise, and inform those living with EDS and help them live full, active, and positive lives. It is the only UK based charity that exclusively represents and supports people with any of the types of EDS, regardless of their position on the EDS spectrum. The charity runs regular events and conferences to bring the EDS community together, and produces literature and merchandise to increase understanding in managing the condition. EDS UK strives to educate the medical community, promoting joined up medical care, treatment, management, and improve accurate diagnosis. EDS UK funds vital research to further understand EDS, finding the gene responsible and working towards a cure.

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Diana Cummins
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