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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

NGLY1 Added to ThinkGenetic Genetic Condition Knowledge Base

July 24, 2018 Ruth O'Keefe Leave a Comment

NGLY1 - Blog - Image

Co-founded by a patient advocate and a genetic counselor, ThinkGenetic helps individuals harness their personal power of advocacy by offering trustworthy information to guide them to the help they need,… CONTINUE

Filed Under: Education, Updates Tagged With: alacrima, autosomal recessive disorder, Congenital disorder of deglycosylation, Deficiency of N-glycanase 1, genetic disorder, NGLY1, NGLY1 deficiency, NGLY1-CDDG, NGLY1-Related Congenital Disorder of Deglycosylation, NGLY1-Related Disorder

Informative Videos on ThinkGenetic

June 22, 2018 Ruth O'Keefe Leave a Comment

Interested in learning more about ThinkGenetic and our mission and services? We know sometimes seeing is more helpful then reading. We encourage you to take a look at some of… CONTINUE

Filed Under: Education, News

From Friend to Intern to Advocate: A Reflection on My Experience with Duchenne Muscular Dystrophy

May 23, 2018 Ruth O'Keefe 1 Comment

Editor’s Note: Today I am excited to release this article, written by an incredible young woman I’ve grown to know and respect as our Digital Marketing Intern. Courtney Burt’s time… CONTINUE

Filed Under: Advocacy, Education Tagged With: Alex Lowe, artificial intelligence, Becker Muscular Dystrophy, Courtney Burt, Danielle Edwards, DMD, DMD gene, Duchenne, Duchenne muscular dystrophy, EXONDYS 51, genetic disease, Jett Foundation, Parent Project Muscular Dystrophy, Tammy Henegar

ThinkGenetic Partners with Genome Medical

May 11, 2018 Ruth O'Keefe Leave a Comment

New Partnership Strengthens ThinkGenetic’s Continued Effort to Reduce Time to Diagnosis In an influential move for the genetics community, ThinkGenetic (ThinkGenetic.com) and Genome Medical (GenomeMedical.com),  a nationwide specialty medical practice… CONTINUE

Filed Under: News, Partners Tagged With: AI, care team, diagnosis, genetic condition, genetic counselors, genetic testing, Genome Medical, HIPAA, medical practice, partnership, SymptomMatcher, telehealth

ThinkGenetic Named Finalist in Largest Veteran Business Competition in the United States

April 4, 2018 Ruth O'Keefe Leave a Comment

Veterans Finalist ThinkGenetic

In a recent press release, The Veterans in Business Association (VIBA) at Rice University announced that ThinkGenetic has been accepted as a finalist into the 2018 Veterans Business Battle out… CONTINUE

Filed Under: News Tagged With: 2018 Veterans Business Battle, Rice University, Veterans Business Battle, Veterans in Business Association, VIBA

ThinkGenetic Supports Homocystinuria Patients Through Partnership with HCU Network Australia

March 28, 2018 Ruth O'Keefe Leave a Comment

ThinkGenetic welcomes HCU Network Australia to the ThinkGenetic Advocacy Partner Program. Through this partnership, people impacted by the genetic condition homocystinuria in Australia and beyond will have a wider array of… CONTINUE

Filed Under: Partners Tagged With: advocacy partner, HCU Network Australia, Homocystinuria, Len Barker, tgadvocacy

ThinkGenetic Provided $100,000 Credit from Amazon Web Services as Part of MassChallenge

March 26, 2018 Ruth O'Keefe Leave a Comment

ThinkGenetic is excited to announce that Amazon Web Services, Inc. (AWS), a subsidiary of Amazon.com, Inc., has approved ThinkGenetic into it’s AWS Activate program. Amazon Web Services provides startups with… CONTINUE

Filed Under: News Tagged With: Amazon, amazon web services, AWS, AWS Activate, Dave Jacob, grant, Massachusetts eHealth Institute, MassChallenge, MeHI, Nick Dougherty, Shire, startup, ThinkGenetic

Partnering to Bring Meaningful Progress Toward Treatments and Cures for Fatal Neurodegenerative Disorder

March 21, 2018 Ruth O'Keefe 1 Comment

Beyond Batten Disease Foundation Partners with ThinkGenetic in Support of Mission Spearheading a unique, cohesive strategy, Beyond Batten Disease Foundation has added ThinkGenetic to its collaborators by joining the ThinkGenetic… CONTINUE

Filed Under: Partners Tagged With: advocacy partner, Batten disease, BBDF, Beyond Batten Disease Foundation, genetic disease, Len Barker, Mary Beth Kiser, vision loss

Advocacy Partnership Raises Awareness of Stomach Cancer as a Global Issue

March 7, 2018 Ruth O'Keefe Leave a Comment

Advocacy Partnership with No Stomach for Cancer Raises Profile of Valuable Stomach Cancer and Hereditary Diffuse Gastric Cancer Resources No Stomach For Cancer (NSFC), a worldwide organization known for helping… CONTINUE

Filed Under: Partners Tagged With: advocacy partner, advocacy partners, CD1 gene, gastric cancer, HDGC, Hereditary Diffuse Gastic Cancer, Len Barker, No Stomach for Cancer, stomach cancer

ThinkGenetic Supports Rare Disease Day – Show Your Rare

February 28, 2018 Ruth O'Keefe 1 Comment

ThinkGenetic is proud to support Rare Disease Day. Why? Because we’re a part of your community! We live and breathe the struggles and triumphs firsthand. Do you know the ThinkGenetic… CONTINUE

Filed Under: Education, Events Tagged With: Brian M. Ashe, Dave Jacob, Katie Brandt, Massachusetts General Hospital, MassBio, MGH, My Rare, National Organization for Rare Disorders, NORD, Rare Disease Day, Ruth O'Keefe, Show Your Rare

Kids with Pfeiffer Syndrome Get More Support with ThinkGenetic / BORN A HERO Partnership

February 7, 2018 Ruth O'Keefe Leave a Comment

BORN A HERO has joined the ThinkGenetic Advocacy Partner Program to help educate the world about children and others with the genetic condition Pfeiffer syndrome. Through this partnership, more people… CONTINUE

Filed Under: Partners Tagged With: advocacy partner, Born a Hero, Len Barker, Pfeiffer syndrome, tgadvocacy

ThinkGenetic Streamlines Access to Patient Resources in India with New Cooperative Agreement with Mapmygenome

February 6, 2018 Ruth O'Keefe Leave a Comment

Today ThinkGenetic has announced a partnership with Mapmygenome™, a leading personal genomics company based in India specializing in clinical genomics and molecular diagnostics focused on preventive healthcare. Through this partnership,… CONTINUE

Filed Under: News, Partners Tagged With: clinical genomics, genetic counseling, genetic disease, MapMyGenome, ThinkGenetic

ThinkGenetic Declared a PULSE@MassChallenge Top Digital Health Startup

January 30, 2018 Ruth O'Keefe 1 Comment

In a recent press release, PULSE@MassChallenge announced that ThinkGenetic was accepted into the Boston-based 2018 startup class out of 500 worldwide applicants. Previous startups that have participated in PULSE@MassChallenge have… CONTINUE

Filed Under: News, Partners Tagged With: artificial intelligence, Mass Digital Health, Massachusetts eHealth Institute, MassChallenge, PULSE@MassChallenge, Rare Disease, Shire

Stealth BioTherapeutics Supports Addition of Mitochondrial Genetic Diseases in ThinkGenetic Knowledge Base

January 17, 2018 Ruth O'Keefe Leave a Comment

In a public press release this week, ThinkGenetic announced that Stealth BioTherapeutics (Stealth) has funded content design, content creation, and clinical trials advertising for mitochondrial diseases. As a first step… CONTINUE

Filed Under: News Tagged With: Barth syndrome, biopharmaceutical, Deepti Babu, genetic condition, genetic disease, Leber hereditary optic neuropathy, LHON, Mitochondrial, mitochondrial disease, mitochondrial disorders, primary mitochondrial myopathy, Stealth, Stealth BioTherapeutics, SymptomMatcher

Bringing Light to Rare Neuromuscular Disease with New ThinkGenetic Advocacy Partnership

January 5, 2018 Ruth O'Keefe 2 Comments

Neuromuscular Disease Foundation Partners with ThinkGenetic to Boost Awareness In a move that will broaden the reach of valuable resources available to those living with GNE Myopathy (or HIBM), the… CONTINUE

Filed Under: Education, Partners Tagged With: advocacy partner, GNE Myopathy, HIBM, Lale' Welsh, Len Barker, Neuromuscular Disease Foundation, partnership, ThinkGenetic

Fabry Disease Study Using ThinkGenetic Diagnostic Aid to be Showcased at WORLDSymposium

December 20, 2017 Ruth O'Keefe Leave a Comment

ThinkGenetic SymptomMatcherTM Diagnostic Aid Tested for Patients with Fabry Disease in Study by Emory University School of Medicine, Grady Memorial Hospital and University of Georgia College of Pharmacy ThinkGenetic today… CONTINUE

Filed Under: Events Tagged With: Carol Ogg, Dawn Jacob Laney, diagnostic odyssey, Emory University School of Medicine, Fabry disease, genetic disease, Grady Memorial Hospital, lysosomal diseases, Morgan Simmons, SymptomMatcher, Taylor Mitchell, ThinkGenetic SymptomMatcher, University of Georgia College of Pharmacy, WORLDSymposium

ThinkGenetic Supports Pregnant Women with New Advocacy Partner, National CMV Foundation

December 18, 2017 Ruth O'Keefe Leave a Comment

In a move to help educate pregnant women and those of childbearing age learn about congenital cytomegalovirus (CMV), ThinkGenetic and the National CMV Foundation have entered into an Advocacy Partner… CONTINUE

Filed Under: Partners Tagged With: advocacy partners, advocate, CMV, congenital CMV, Cytomegalovirus, National CMV Foundation, pregnancy, viral infection

ThinkGenetic Integrates with FDNA’s Face2Gene to Help Undiagnosed Patients Find Answers

December 14, 2017 Ruth O'Keefe Leave a Comment

FDNA Integration with ThinkGenetic

In a public press release today, ThinkGenetic announced a collaboration with FDNA to help patients with undiagnosed genetic diseases. FDNA uses AI to detect physiological patterns that reveal genes affecting… CONTINUE

Filed Under: News, Partners, Press

“Rare is Everywhere” Author Partners with ThinkGenetic

November 29, 2017 Ruth O'Keefe Leave a Comment

Deborah Katz, health practitioner, author, illustrator, and founder of Rare is Everywhere Global Productions, has officially partnered with ThinkGenetic to support those living with rare genetic disorders. In November 2016,… CONTINUE

Filed Under: Partners Tagged With: Deborah Katz, Len Barker, Rare Disease Foundation, Rare is Everywhere, Rare is Everywhere Global Productions

Introducing Courtney Burt, Part Three of ThinkGenetic’s 2017 Intern Class

November 15, 2017 Ruth O'Keefe Leave a Comment

In our third and final part of our ThinkGenetic intern introductions, we are highlighting our intern from Saint Michael’s College, Courtney Burt. Each of our three interns is eager to… CONTINUE

Filed Under: News Tagged With: Courtney Burt, education, intern, Saint Michael's College

Upcoming Presentation on Making Your Dream Genetic Counseling Career a Reality

November 1, 2017 Ruth O'Keefe Leave a Comment

Deepti Babu, MS, CGC, ThinkGenetic Vice President, Communications and Patient Advocacy, looks forward to being an invited speaker at The Indiana Network of Genetic Counselors’ “Upgrade: 4Genetics version 20.17” continuing… CONTINUE

Filed Under: Events Tagged With: career, continuing education, Deepti Babu, event, genetic counselor, Indiana Network of Genetic Counselors

Canadian Fabry Association Partners with ThinkGenetic To Broaden Support for Patients with Fabry Disease

October 18, 2017 Ruth O'Keefe Leave a Comment

The Canadian Fabry Association (CFA), a non-profit organization raising awareness and educating the public about Fabry disease, has joined ThinkGenetic’s Advocacy Partner program. The CFA is committed to improving the… CONTINUE

Filed Under: Partners Tagged With: advocacy partner, Canadian Fabry Association, CFA, Fabry, Julia Alton, Len Barker, partnership

Introducing Taylor Mitchell, Part Two of ThinkGenetic’s 2017 Intern Class

October 16, 2017 Ruth O'Keefe 1 Comment

In part two of our ThinkGenetic intern introductions, we are highlighting our intern from the University of Georgia College of Pharmacy, Taylor Mitchell. Each of our three interns is eager… CONTINUE

Filed Under: News Tagged With: education, intern, pharmacy, Taylor Mitchell, University of Georgia

Introducing Georgia Loucopoulos, Part of ThinkGenetic’s 2017 Intern Class

September 20, 2017 Ruth O'Keefe 2 Comments

Georgia Loucopoulos - ThinkGenetic - Intern Class

ThinkGenetic’s growth has reached an exciting milestone – interns are joining us from the fields of genetic counseling, marketing, and pharmacy! Starting this fall, ThinkGenetic is proud to work with… CONTINUE

Filed Under: News Tagged With: education, Emory University, Georgia Loucopoulos, intern

ThinkGenetic Donates $500 to Advocacy Partner, cureCADASIL

September 8, 2017 Ruth O'Keefe Leave a Comment

    Congratulations to ThinkGenetic Advocacy Partner, cureCADASIL, who received a donation of $500 from ThinkGenetic. The donation amount was based on converted ThinkPoints, which ThinkGenetic users accrued in August 2017. The… CONTINUE

Filed Under: News, Partners Tagged With: advocacy partner, cureCADASIL, donation, support

ThinkGenetic CEO “Disruptor” to Discuss the Patient Perspective of Advancing Clinical Trials

August 22, 2017 Ruth O'Keefe Leave a Comment

ThinkGenetic CEO, Dave Jacob, is honored to be an invited speaker during the “Ask the Patient” discussions taking place during meals and breaks at the 7th annual DPharm: Disruptive Innovations… CONTINUE

Filed Under: Events Tagged With: Ask a Patient, Boston, clinical trials, Dave Jacob, disruptive innovators, DPharm

Recent ThinkGenetic.com Condition Additions for 07/30/2017

July 30, 2017 Ruth O'Keefe Leave a Comment

ThinkGenetic strives to create, update, and review content regularly to ensure the information we provide is accurate, referenced, and available 24/7 to anyone searching for answers on genetic conditions and… CONTINUE

Filed Under: Updates Tagged With: Argininosuccinic aciduria, genetic condition, genetic disease, genetic disorder, Nephrotic syndrome type 1, Propionic acidemia, ThinkGenetic, Tuberous sclerosis

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