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Supporting Rare Disease Day 2022

February 25, 2022 Jennifer Dykeman 2 Comments

by Jennifer Dykeman, MMSc Candidate, 2023 February 28th is Rare Disease Day! In the United States, a disease is defined as rare if it affects less than 200,000 people. It… CONTINUE

Filed Under: Advocacy, Advocacy Alliance, Events, News Tagged With: advocacy, Find a Genetic Counselor, GARD, Genetic and Rare Disease Information Center, National Organization for Rare Diseases, National Society of Genetic Counselor, NIH, NORD, NSGC, patient services, Rare Disease Day

Event: Care Models and Advocating for Yourself with CARES Foundation

January 7, 2022 Ruth O'Keefe Leave a Comment

Are you living with or caring for someone with adrenal insufficiency (such as CAH, Addison’s disease, and PCOS)? You’re invited to a special online event… Webinar: Care Models; Advocating for… CONTINUE

Filed Under: Advocacy, Events Tagged With: adrenal insufficiency, advocacy, CAH, Care Model, caregiver, CARES Foundation, Cushing syndrome, Dawn Laney, Dina Matos, Emory University, genetic disease, patient care, patient-centered medical homes, PCMH, PCOS, Rare Disease, Spruce Biosciences, ThinkGenetic, webinar

Ruth O’Keefe Promoted to ThinkGenetic Vice President, Marketing and Patient Advocacy

April 2, 2019 thinkgenetic Leave a Comment

BOSTON, Ma., April 2, 2019 (Newswire.com) – ThinkGenetic, Inc. (www.ThinkGenetic.com), is excited to announce the promotion of Ruth O’Keefe to Vice President, Marketing and Patient Advocacy. ThinkGenetic, the creators of… CONTINUE

Filed Under: Advocacy, News, Press Tagged With: advocacy, Ruth O'Keefe, staff, ThinkGenetic

Taking a Closer Look at Advocacy: Accelerating The Cures of Tomorrow

August 15, 2018 Ruth O'Keefe Leave a Comment

Rare Genomics Institute - Blog - Bottom Story

More than just an organization, advocacy partner, the Rare Genomics Institute (RG), is a community dedicated to helping rare disease patients find hope for a cure. Sharing a mission of… CONTINUE

Filed Under: Advocacy, Partners Tagged With: advocacy, advocacy partner, genetic condition, genetic disease, genetic disorder, iHope, Illumina, inherited condition, inherited disease, Len Barker, patient advocacy, Rare Disease, Rare Genomics Institute, Romina Oritz, tgadvocacy

Endless Hope for Klippel-Feil Syndrome

August 6, 2018 Ruth O'Keefe 6 Comments

Awareness - Klippel-Feil syndrome - ThinkGenetic

Editor’s Note: It has been such an honor working with Sharon Rose to represent the Klippel-Feil syndrome (KFS) community. Sharon Rose shared her strong desire to work with ThinkGenetic to… CONTINUE

Filed Under: Advocacy, Education Tagged With: advocacy, advocate, awareness, chronic pain, Coordination of Rare Diseases at Sanford, Ehlers-Danlos syndrome, Emily Lemiska, KFS, KFS Freedom, Klippel-Feil Syndrome, Philip Giampietro, raredisease, research, Sharon Rose Nissley, St. Christopher’s Hospital for Children

Taking a Closer Look at Advocacy: Creating Hope with a Support Network for the Rare Disease Community

August 1, 2018 Ruth O'Keefe Leave a Comment

ThinkGenetic is honored to partner with many incredible organizations, each with their own stories, struggles and triumphs. This month, we are taking a moment to highlight the incredible work of… CONTINUE

Filed Under: Advocacy, Partners Tagged With: advocacy, advocacy partner, funding research, genetic condition, genetic disease, genetic disorder, inherited condition, inherited disease, patient advocacy, Rare Disease, Rare Disease Foundation, tgadvocacy

Connecting, Collaborating, and Activating at the Vibrant 2017 RARE Patient Advocacy Summit

September 28, 2017 Dawn Laney, MS, CGC, CCRC | ThinkGenetic Co-Founder Leave a Comment

While many of our ThinkGenetic teammates helped others “harness their inner power” at the National Society of Genetic Counselors Annual Conference in Columbus, Ohio, ThinkGenetic CEO, Dave Jacob and I… CONTINUE

Filed Under: Events Tagged With: advocacy, Dave Jacob, Dawn Laney, Deborah Katz, Dekel Gelbman, Face2Gene, FDNA, genetic counselor, genetic disease, Global Genes, Rare Disease, summit, SymptomMatcher

ThinkGenetic Signs First International Advocacy Partner

December 6, 2016 Ruth O'Keefe Leave a Comment

France based support group, Cutis Laxa Internationale, becomes first International ThinkGenetic Advocacy Partner Cutis Laxa Internationale became an official ThinkGenetic Advocacy Partner today, the first advocacy partner based outside the… CONTINUE

Filed Under: News, Partners Tagged With: advocacy, advocacy group, advocacy partner, Cutis Laxa, Cutis Laxa Internationale, Dave Jacob, Marie-Claude Boiteux, Partners, partnership, Ruth O'Keefe, support group, ThinkGenetic

Lauren Potter Has It All… Including an Extra Chromosome!

October 26, 2016 Jennifer Sturges Shinn Leave a Comment

Lauren Potter, 26, is one of the most famous people living with Down Syndrome (also known as Trisomy 21). Lauren’s role as teenager Becky Jackson on Glee from 2009-2015, brought… CONTINUE

Filed Under: Education Tagged With: advocacy, Becky Jackson, Born This Way, Down syndrome, Glee, Jennifer Sturges Shinn, Lauren Potter, Sue Sylvester, Trisomy 21

Partner Agreement with FSIG will Help Get Answers to the Fabry Disease Community

June 28, 2016 Ruth O'Keefe Leave a Comment

In a showing of mutual respect and appreciation, Fabry Support & Information Group (FSIG) signed an Advocate Partnership Agreement with ThinkGenetic. “We are truly thrilled to partner with ThinkGenetic and… CONTINUE

Filed Under: Partners Tagged With: advocacy, Dawn Jacob Laney, Dawn Laney, FLGenomics, FSIG, genetic disease, genetic disorder, GenomicsFest, Jack Johnson, partnership, Ruth O'Keefe, ThinkGenetic

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