Bob Saget privately helped 9-year-old Scleroderma patient and her family in his final years

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Two years before his death, Bob Saget quietly offered his support to a family whose 9-year-old daughter is suffering from Scleroderma, the same disease that took the life of his sister in 1994. 

Saget was a tireless advocate for those battling the disease, constantly doing charitable events and working on the Board of the Scleroderma Research Foundation. On multiple occasions, he noted how committed he was to finding a cure after he was personally affected by the disease. The comedian’s sister, Gay, died at age 47 of the disease years ago. 

According to TMZ, part of Bob’s work with combating the disease included reaching out to a girl named Sophie Anne, who was diagnosed with the disease when she was 7. Saget reportedly sent the little girl personalized videos offering her comfort, support and hope that a cure could be forthcoming. 

The outlet notes that Saget understood better than anyone that Schleroderma affects not just the patient, but the whole family. As a result, he made himself available to the girl’s sister and parents as well. He spent more than 30 minutes on the phone with Sophie’s sister so that she could write a paper on him titled "Bob Saget: My Everyday Hero."

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Bob Saget died unexpectedly at age 65.  (Emma McIntyre/Getty Images)

Months ago, when Saget was performing in North Carolina, he comped Sophie’s parents, Martha and Jeff, tickets to one of his shows. In addition to paying for their tickets and meals, he invited them backstage after the performance. 

The "Full House" actor clearly kept in touch. In early December, weeks before his unexpected death, he shared a video on his Instagram that was a repost from the Scleroderma Research Foundation’s page that starred Sophie discussing the disease. 

"Sophie Anne is one of the reasons I will forever be on the Board of Directors and fight to find the cure to the disease Scleroderma that took my sister‘s life," Saget captioned the post before adding the original text from the foundation. 

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"Sophie Anne and her family are filled with hope, and they inspire us every single day to stay laser-focused on finding a cure. With your support, together we can make a meaningful difference for Sophie Anne, her family, and all those who are touched by this disease," the post continues. 

Actor/comedian Bob Saget was a tireless advocate for Scleroderma before his death. (Michael Tran/FilmMagic)

Saget served on the board of the San Francisco-based organization for 25 years. The foundation paid a tribute to the actor on its website: "It is with a very heavy heart that we mourn the loss of our dear friend and Board member, Bob Saget. Bob was a champion for scleroderma patients everywhere dating back to 1991 when he first became involved with the Scleroderma Research Foundation, even before his sister Gay lost her battle with the disease."  

Saget was involved with the foundation’s fundraising event called Cool Comedy-Hot Cuisine, according to its website. This was prior to his sister being diagnosed with the disease. 

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Scleroderma means "hard skin." According to health experts, it is an autoimmune disease that causes the skin to become inflamed, which then sparks the body’s immune system to make too much collagen. Health experts told Fox News the disease varies in severity and rate of progression.   

Bob Saget helped a 9-year-old Scleroderma patient before his death.  (Paul Archuleta/FilmMagic)

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"Scleroderma (aka systemic sclerosis) is a chronic autoimmune condition characterized by progressive thickening, tightening, and hardening of the skin," Dr. Wendy Chi, a rheumatologist for Mount Sinai Health System in New York City, told Fox News in an email and added, "It typically starts on the hands and face, but can spread to involve extremities and trunk in certain patients." 

Fox News' Amy McGorry contributed to this report.