Meet Rare New England
At the beginning of 2019, RNE geared up for introducing ourselves to the local community as our 3rd year anniversary approached at the end of April. We invited local community stakeholders, including the local hospital, visiting nurses, YMCA, local banking institutions, the media, and more, to hear about rare diseases and RNE's programs aiming to make a positive difference. We also invited industry to learn about our efforts. 
Thank you to everyone who joined us and learned more about the rare disease community and RNE efforts to serve this community.

Speakers:
  • Julie Gortze, RNE Founder
  • Lisa Deck, Rare Disease Advocate and Patient
  • Mark Korson MD, Clinical Biochemical Geneticist
  • John Campbell, Clinical Development Director, Pharma
  • Josephy Kennedy III, Congressman
  • ​Joseph McKenna, MA State Representative
  • Paul Feeney, MA Senator
Here is the full Facebook Live video from the event.
Thank you to our friends at DoubleACS TV for featuring us on their daily news segment. Check out the story below.
Here are some pictures from the event!
Congressman Joe Kennedy III:Transcript, May 3, 2019


"I've talked to many families that have said, 'the only thing worse than knowing that there's no cure for my child, is knowing that there is, but I can't afford it.' That cannot be acceptable today in this country." (Congressman Kennedy III)

Sharing Congressman Kennedy's powerful speech. Thank you, Congressman Kennedy, for illuminating such a vital and worthwhile organization. (BC Mosher)

Congressman Joe Kennedy III: "The challenges that so many families across our Commonwealth, across our country, face for those that are struggling, have a family member struggling with a rare disease it is things that I've come to know and appreciate and to learn is this is not an issue that affects just a single patient, this affects the entire family. It affects the family in terms of the ability for their loved ones to provide the care that is necessary. It affects the family, clearly, in terms of the financial burden that oftentimes comes down on family members.

And without the robust federal understanding, support, structures, incentives, and protections put in place, it's one that all too often ends up with family members having to choose between how you care for one loved one versus another one.

And that's not the burden that the wealthiest, most successful nation on the plant should be putting on families because somebody is sick.

We, my responsibility, I think all of us in Congress, need to try to find a way:

1 - To ensure the proper structures and incentives to make sure we continue to innovate so that we find cures for these conditions and these diseases. And that's not just mitigating the symptoms, but actually curing the underlying illness.

That we recognize then that as those cures are developed, that the time, the complexity, the costs associated with them, that that does not lead to cost structures that then would put those medicines out of reach for so many families.

I've talked to many families that have said, 'the only thing worse than knowing that there is no cure for my child, is knowing that there is, but I can't afford it.'" That cannot be acceptable today in this country.

2- Is making sure that for the millions of Americans that are unaware about how this system operates - the burden that it puts on those families -- the ineffectiveness of some of the structures and incentives put in place, that we do a better job of educating them and continuing to push Congress to make the adjustments that are necessary to spread that innovation, but then to ensure that every single patient has the access to the care that they need when they need it at a price that they can afford.

Your efforts and your advocacy, the ways in which you have elevated these issues and the circumstances that - how they affect your families and families of those that you care about and families of those that you represent, have been as critically important to me as I have learned about these issues.

And as Congress does, and I do believe we will, finally start to wrestle with issues around the cost of the prescription drugs; and that we make sure we get this right because we have a duty and an obligation, as I said:

1 - To make sure that people -- everybody across this country gets access to medication that they need when they need it, and at a price they can afford. But

2- that we ensure that that innovation continues so that we can continue to make progress on these conditions.

We have a chance in Congress to actually restructure this field. And I will be looking to you to make sure that as we do so, that we keep the focus on the patients and their families and to make sure that we do this right".

*Transcript Credit to BC Mosher

Click here to read transcript of Congressman Kennedy's talk.