NH Rare Disorders Collaborative

If you or someone you know has been accused of child abuse because of symptoms of your child's Rare Disease, I need to hear from you! 🦓

I need THREE families to testify for a bill similar to the one passed in Florida.

Contact me at: [email protected]

Bipartisan support for considering rare medical conditions in child protective probes • Florida Phoenix A bill inserting further medical evaluation into cases of suspected child abuse received unanimous support in its first committee stop Monday. The Senate Children, Families, and Elder Affairs committee approved SB 42, sponsored by Sen. Barbara Sharief. The bill would provide more time and opportunit...

MEETING ALERT! NH RDAC, June 12th at 10 am.
Link to the zoom meeting provided on the website.

Rare Disease Advisory Council The Rare Disease Advisory Council was established under New Hampshire Law Section 126-A:79 to promote public awareness of rare diseases within the state. The Council carries out this purpose by providing information, offering guidance, and making recommendations to the New Hampshire Department of He...

Update on the Right to Try Bill.

https://granitegrok.com/new-england/nh/2026/06/cornerstone-right-to-try-expansion-passes-and-fails?fbclid=IwdGRjcAST48NjbGNrBJPjvmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHvF45fgpbCjyCFSFBoiAw4V8vW93Kyx_b4-ClroDHYWYtn1kelyVC3qYVS47_aem_oRpAxZpGECFPOtVC38G5BQ

CORNERSTONE: Right To Try Expansion Passes and Fails - Granite Grok HB 1735: A Setback for Right to Try in New Hampshire After several weeks of negotiations and efforts to rescue HB 1735 — championed from the start by prime sponsor Rep. Brian Cole — the Senate brought the bill to a final vote on Thursday, June 4 and passed it with an amendment that rendered it...

New discovery!
https://www.facebook.com/share/1Cn1NLpygP/

For years, hypermobile Ehlers-Danlos syndrome, or hEDS, has been understood primarily as a connective tissue disorder — a condition of loose joints, fragile skin, and collagen that does not function properly.

But two recent studies, one from Boston University and one from the Medical University of South Carolina (MUSC), are pointing toward a major shift in understanding: hEDS may not begin with collagen at all. It may begin with the immune system.

The Boston University study, conducted by Dr. Michael Holick (featured in COMPLICATED) analyzed genetic data from hEDS patients and found that the most common variants were not in collagen genes, but in immune system genes, particularly HLA genes, which help the body distinguish self from foreign invaders. These variants appeared in 74% of hEDS patients studied, more than double the rate found in unaffected family members.

Meanwhile, a separate team at MUSC (also featured prominently in COMPLICATED) took a different approach, studying proteins in the blood rather than genes. Their findings pointed in the same direction: 80% of the proteins that differed between hEDS patients and healthy controls were tied to immune, inflammatory, or coagulation pathways. Nearly half involved the complement system, a rapid-response arm of the immune system. Notably, collagen and other structural proteins were not among the major differences.

Together, these studies suggest a powerful new possibility: that collagen problems in hEDS may be downstream effects of immune dysfunction, not the original cause. In other words, the immune system may misfire first, driving inflammation that eventually affects connective tissue.

For patients, the significance is hard to overstate. These findings offer a possible biological explanation for the immune-like symptoms so many people with hEDS report — mast cell activation, inflammatory flares, sensitivities, and crashes after infection. They also suggest that future treatments may need to look beyond joints, braces, and pain management, and toward the immune pathways driving the illness.

The studies are still early and need to be confirmed in larger groups. But the convergence is striking: one team looked at genes, the other at proteins, and both found evidence that the immune system may be central to hEDS.

That is precisely the terrain COMPLICATED explores — the space between what patients have long known in their bodies and what medicine is only beginning to understand.

I am sharing a very important webinar that I received from ElevateRare on May 30, 2026. The webinar will take place on June 4 at 12 Noon EST.

Hi Jon,

I hope you are doing well. I'm trying to help promote the webinar we are having next week. Would you mind sharing about our webinar with your social media connections? It is on medical PTSD experienced by patients (and family) with connective tissue disorders. It is happening June 4 at noon ET.



I have attached a LinkedIN post and here are the links to the videos that we have created for the event.



[https://youtube.com/shorts/d46V3ISaadE](https://youtube.com/shorts/d46V3ISaadE)

[https://youtube.com/shorts/Iv2rDCgNZ6Y](https://youtube.com/shorts/Iv2rDCgNZ6Y)



Kindly,

Kathleen



Kathleen D. Hoffman, PhD MSPH

[www.linkedin.com/in/kathleenhoffmanphd](http://www.linkedin.com/in/kathleenhoffmanphd)

[https://youtube.com/shorts/d46V3ISaadE](https://youtube.com/shorts/d46V3ISaadE)

[https://youtube.com/shorts/Iv2rDCgNZ6Y](https://youtube.com/shorts/Iv2rDCgNZ6Y)

The Right to Try Bill is dead.

From Cornerstone Action
Setbacks in the Senate,
Bravery in the House

This has been a painful week at the State House. The events of these past several weeks have highlighted more than ever the need for faithful Christians in New Hampshire to be politically engaged - through running for office, recruiting faithful candidates, and using our voices to encourage our elected officials to do the right thing. To all of you who have spent time the past several months calling and writing your legislators to advocate for life, family and liberty in NH, thank you for standing with us. This session has tested us. But the people of faith in New Hampshire have not given up, and neither have we.


🔴 The Long Death of Right to Try

We are deeply disappointed to report that the Right to Try expansion is dead — not because it lacked support, but because a small group of Republican senators refused to let it live.

The bill, HB 1735, would have expanded New Hampshire's Right to Try law to give patients suffering from debilitating conditions access to experimental therapies that may offer them relief when nothing else has. It had bipartisan support in the House. It had the support of the Governor. It had the support of patients and families across the state who are out of options and running out of time.

The Senate killed it anyway — voting to send HB 1735 to interim study, which is Concord's polite way of shelving a bill without having to vote against it directly.

The House was not ready to give up. Members added the original Right to Try text as an amendment to SB 504, giving the bill a second chance at life. The Senate responded by voting to non-concur with the House — and then, when the House requested a committee of conference to work out a compromise, the Senate refused even that.

At that point, Senator Rochefort — the same senator leading the charge on the breast-surgery bill you will read about below — attached SB 504 to a House bill, HB 194. The House again requested a committee of conference, willing to negotiate, willing to find common ground. The Senate would not accede to anything. There was no compromise offered, no middle ground sought. The Senate simply stonewalled until the effort collapsed.

House Speaker Sherman Packard captured the frustration well: "We are disappointed that the State Senate chose not to advance what would have been a revolutionary bill. The House has repeatedly stood to ensure that patients and their doctors have every option available in the pursuit of better health... The Senate declined to pursue this legislation, turning down billions of dollars of economic activity and shutting down the expansion of health and wellness pathways for every Granite Stater."

The people who would have benefited from this bill are real. They are your family, friends, neighbors— people in pain, people who have exhausted every approved option, people who simply wanted the right to try. The Senate let them down at every turn.

We may have lost this battle, but we are not going to stop fighting!

Granite Bio Innovation (@GraniteBio) on X

Governor Kelly Ayotte thank you for supporting the Rare Disease Community with your support of the Right to Try Bill HB 1735 that has now been included with SB 504!

Adam Sexton (@AdamSextonWMUR) on X