Welcome to "The World of Rare Disease", a Rare New England, INC production!
RNE has began production of a cable show series about rare and complex diseases. This program will offer information, education and highlight resources available to all stakeholders living and working in the rare disease community.
"The World of Rare Disease"
Enjoy some pics of our first program recording!
We thank Mansfield Cable Access for this wonderful opportunity and for the fabulous set created just for RNE, seen here with RNE Founder, Julie Gortze, Board Member, Lois Foster and Committee Member, Lisa Deck!
Episode 1, "Rare New England"
Recorded September 2018
Episode 2, "Depression and Anxiety in the
Rare and Complex Disease Patient"
With Richard Barnum MD
Recorded October 24, 2018
Episode 3, "The Role of Pharmaceuticals in the Rare Disease World"
Part 1
With John Campbell
Recorded November 7, 2018
Episode 4, "The Role of Pharmaceuticals in the Rare Disease World"
Part 2
With John Campbell
Recorded November 7, 2018
Episode 5, "RNE Highlights TeamIMPACT":
Rachael Rogovin is the Director of Clinical Services at Team IMPACT and gave us an overview of how Team IMPACT connects kids with chronic illnesses to local college sports teams.
Recorded December 18, 2018
Episode 6, "State of the Rare":
Host Lisa Deck and RNE Founder Julie Gortze provide an overview of programs and services offered by Rare New England for 2019, including our annual conference, Rare Disease Day Speaker Series, Career Fairs in Medical Genetics, and the World of Rare Disease.
Recorded January 30th, 2019.
Episode 7, "RNE Highlights Inspire":
Seth Rotberg is the Partnerships Manager at Inspire and in this episode, provides an overview of the organization. Inspire is an online resource that connects patients, family, friends, caregivers, and health professionals for health and wellness support.
Recorded February 8th, 2019.
We thank our sponsors!!
Episode 8, "A Patient's Story about Huntington's Disease":
In this episode, Seth Rotberg shares his experience living with Huntington’s Disease. He travels around the country talking about the Huntington’s Disease community and the challenges of having a family impacted by this condition.
Recorded February 8th, 2019.
Episode 9, "RNE Highlights the EveryLife Foundation for Rare Diseases":
In this episode, Christina Hartman talks about the EveryLife Foundation for Rare Diseases and its many programs, and resources. Christina serves as the Senior Director for Advocacy and Policy for EveryLife and shares more with us about her personal experience with rare diseases.
Recorded March 31, 2019.
Episode 10, "Federal Policy Overview for Rare Diseases":
Christina Hartman is a D.C-based policy and advocacy expert, who also serves as the Senior Director for Advocacy and Policy for EveryLife. In this episode, she talks about policy in the federal government and how EveryLife advocates for the rare disease community.
Recorded March 31, 2019.
Episode 11, "Barth Syndrome":
Shelley Bowen is the driving force behind Barth Syndrome advocacy and awareness. In this episode, Shelley shares her personal connection to Barth Syndrome and explains more about the condition.
Recorded April 23, 2019.
Episode 12, "RNE highlights Barth Syndrome Foundation":
In this episode, Shelley Bowen, the Founder and Director of Family Services and Advocacy at the Barth Syndrome Foundation shares more about this amazing organization. Shelley talks about her family’s experience with Barth Syndrome and how it went from an unnamed, lethal condition to a treatable one.
Recorded April 23, 2019.
RNE hosts will vary as we bring in experts from the many subjects relating to rare and complex healthcare issues, but will include RNE Board Members, Committee Members and our fabulous volunteers.
We are introducing "RNE in Motion", a segment at the end of each show where we will answer questions sent in by viewers. We are hoping, by providing this piece, we are able to keep the RDC moving toward solutions for better care and improved quality of lives for all involved. Email Info@rarenewengland.org with your questions/comments!
*Do you have something to offer the rare disease community? Do you want us to help provide awareness of a rare disease? Contact Lisa Deck at Lisa@rarenewengland.org to start a conversation and consider participating on The World of Rare Disease.
Click on the link or scroll down to read a brief summary of and watch each episode recording:
Episode 13, "The Important Role of Patients as Teachers"
In this episode, Dr. Mark Korson, a founding board member of RNE, shares how patients can be the teachers for medical health professionals and trainees.
Recorded June 17th, 2019.
Episode 14, "The Workforce Shortage in Genetics"
Dr. Mark Korson is a Pediatrician and Metabolic Geneticist who, on this episode, talks about the shortage of Geneticists. This lack of Geneticists harms patients and puts more pressure on other doctors without the necessary training.
Recorded June 17th, 2019.
Episode 15, "H1934 An Act to Create a MA Rare Disease Advisory Council"
In this episode, MA State Representatives Hannah Kane and Joseph McKenna share more about H1934, a bill that would implement a Rare Disease Advisory Council in Massachusetts.
Recorded July 16th, 2019.
Episode 16, "The Process of Lawmaking"
In this episode, MA State Representatives Hannah Kane and Joseph McKenna discuss the role of representatives in the legislative process and how community members can directly influence policy.
Recorded July 16th, 2019.
Episode 17, "RNE Highlights the Rhode Island Parent Information Network"
In this episode, Tara Townsend-Hayes and Susan Donovan share about the Rhode Island Parent Information Network (RIPIN). They talk about history, mission, and programs available through their organization.
Episode 18, "Family Voices and the Caregiver Perspective"
In this episode, Tara Townsend-Hayes, a program coordinator at the Rhode Island Parent Information Network (RIPIN), shares how she became involved in RIPIN and explains more about the Family Voices program.
