[{"_1":2,"_88":-5,"_89":-5},"loaderData",{"_3":4,"_26":27},"root",{"_5":6,"_17":10,"_18":19,"_20":21,"_22":10,"_23":-5,"_24":-5,"_25":10},"user",{"_7":8,"_9":10,"_11":10,"_12":-5,"_13":-5,"_14":15,"_16":-5},"roles",[],"isAuthenticated",false,"isPremium","planName","subscriptionStatus","featureFlags",{},"insightsBudget","isDevelopmentHost","userPreferences",{},"recaptchaSiteKey","6LcvOJcUAAAAAHsB-gPGfGktcRlKpH7OTIU_dMTD","isImpersonating","impersonation","affiliateStatus","isFreedomPortal","routes/v2/article/layout",{"_28":29,"_30":31},"notFound",true,"relatedArticles",[32,76],{"_33":34,"_35":36,"_37":38,"_39":40,"_41":42,"_43":44,"_45":46,"_47":48,"_49":50,"_51":52,"_53":54,"_55":56,"_57":58,"_59":60,"_61":62,"_63":64,"_65":66,"_67":68,"_69":70,"_71":72,"_73":74,"_75":74},"mediaId",6182931,"mediaKeyId","5102942-e002887ca63ccc67274a831a831145ba","parentId",5102942,"title","UConn launches state-based genetic counseling master’s program and asks rare-disease groups for training partnerships","audioSeconds",1188,"startMs",247000,"endMs",1435000,"viewUrl","/Search/View?dp=1&key=5102942-e002887ca63ccc67274a831a831145ba&start=247&end=1435","thumbnailUrl","https://assets.pipeline.soar.com/5102942-e002887ca63ccc67274a831a831145ba/thumbnail_247000.jpg","articleUrl","/articles/6182931/Connecticut/UConn-launches-state-based-genetic-counseling-masters-program-and-asks-rare-disease-groups-for-training-partnerships","mediaUrl","https://secure.pipeline.soar.com/6182931-809342710de2698fbcee9473cbade579/orig.mp4?Expires=1770955114&Signature=KkJfGL8PnDHgPj59q12q21pCVqsjkhDnIbVijGNlKp-LvZX8mYjIeQDYLPOjLoK6wTsVsotajUG~DL0-fNf3ZERkFtbQWW4lrZW1~x9PFTNYEflaoC6rAZpW2NV2AtNeDNmymOgT7gXAxrgfzVY3H~5gJ4lJ9aygcnV9Dy2FmAsmswRPsL2TEexSsvZNzRifqLf2vuIUBT7SFTXAyVpU1T9bZR326aRXg3ZEjVyWEcsMoR6YuCH1yC61L1fldNqdLJudF6SAIiUaE-CIcDHi4xvcUxR5FW709cnwr8baDjGmnQxy5Q06jxzFnhubcpOpF2nc7WvN628HuB55bPnA0w__&Key-Pair-Id=KUT5TJCACFTXG","author","Department of Public Health","date","2025-06-30T17:38:45.65Z","article","Leslie Bennett, cochair of the Rare Disease Advisory Council, introduced Maria Gayera and Leila Iyer from the University of Connecticut’s genetic counseling program, who told council members the program graduated its first cohort in May and is intended to expand access to genetics services across Connecticut.

Maria Gayera, program director for the Genetic Counseling Program at UConn, said the program is the only genetic counseling program housed in a public institution in New England and that being state-based helps reduce tuition costs for regional students. “We just graduated our very first cohort,” Gayera said. “One of our key goals is to really create a pipeline … of genetic professionals to help better serve our community.”

Gayera and Leila Iyer, assistant program director and fieldwork coordinator, described an online, asynchronous didactic curriculum and a Professional Science Master’s (PSM) structure that combines scientific coursework with career-development training. “We are one of very few programs in the country who have an online modality,” Gayera said. Iyer described a substantial fieldwork component she called the “enrichment rotation” in the second year that lets students arrange clinical and nonclinical placements.

Iyer said students have taken rotations with research partners such as the Jackson Laboratory, with UConn’s Newborn Screening Program and with patient-advocacy organizations, including Path CT. “Our students have chosen to do time within education, for example, with JAX, getting some research experience there,” she said. Iyer added that the rotations aim to increase students’ exposure to advocacy, lived experience and equitable care so that new graduates are “ready to hit the ground running.”

Council members responded with offers to connect the program to state patient groups and community events. Colleen Brunetti, the adult living with a rare disease representative, and other members suggested outreach lists and support groups as potential training sites. Mary Caruso, a council patient-advocate member, outlined the council’s plan to compile a statewide list of patient groups and said students could assist with outreach for that mapping project.

Gayera and Iyer asked council members for specific partnership opportunities and community placements for second-year students who can assist with projects as well as shadowing and outreach. The presenters declined any request for immediate commitments but said they would follow up on suggested connections. No formal action was taken; the session functioned as a program briefing and request for voluntary partnerships.

The presentation highlighted two operational details the council discussed: the program’s PSM designation, intended to boost career readiness, and the online asynchronous format intended to improve access for learners who must work or care for family members. Council members discussed possible opportunities for students to support local advocacy events and resource-mapping work but did not authorize any funding or formal placement agreements during the meeting.

Council staff and presenters agreed to follow up by exchanging contact information and lists of state patient groups and support organizations that could host or partner with students. The Genetic Counseling Program representatives said they welcome opportunities for students to participate in community events and projects and will coordinate with RDAC members who volunteer placements or outreach support.","mediaType","Video","parentTitle","Rare Disease Advisory Council, June 24, 2025","oneSentenceSummary","Leslie Bennett, cochair of the Rare Disease Advisory Council, introduced Maria Gayera and Leila Iyer from the University of Connecticut, who said UConn’s new genetic counseling master’s program graduated its first cohort in May and is designed as an online, state-based pipeline for genetic counselors.","taxTitle","Department of Public Health, Departments and Agencies, Organizations, Executive, Connecticut","taxId",15791,"location","Connecticut","headline","","shortSummary",{"_33":77,"_35":36,"_37":38,"_39":78,"_41":79,"_43":80,"_45":81,"_47":82,"_49":83,"_51":84,"_53":85,"_55":56,"_57":58,"_59":86,"_61":62,"_63":64,"_65":87,"_67":68,"_69":70,"_71":72,"_73":74,"_75":74},6182926,"Rare Disease Advisory Council reports legislative wins, launches statewide resource map and moves September meeting",1675,1449000,3124000,"/Search/View?dp=1&key=5102942-e002887ca63ccc67274a831a831145ba&start=1449&end=3124","https://assets.pipeline.soar.com/5102942-e002887ca63ccc67274a831a831145ba/thumbnail_1449000.jpg","/articles/6182926/Connecticut/Rare-Disease-Advisory-Council-reports-legislative-wins-launches-statewide-resource-map-and-moves-September-meeting","https://secure.pipeline.soar.com/6182926-2526e80f7687474ca601e2977979b9ef/orig.mp4?Expires=1770955114&Signature=dvTmsn1qna2xu3ULH-U50SWKAboi6I3f7loBy6DSzd8ttl68WDj--OFyLJI-Swb8X87pjnHgaJxQ~x5pUX9QPk0xHJ5ACBEeOaPRtW0qCDhQ7InGze3wSCYckanh7zV-YPXU~ZaIERrahrRq9b9ZaFKhBA50DhyyatIRqOp4n~xpcKeI-Zrtk1nQi~tArYOs68ZOKzxDTQYi0tduTJJ5KKLNODy8W6FrRdGREjQQUCzGxbP4KJYexA9gH-eZZAAFbUmOjn6GhyXIGldZ-IwswN05L4I9GxJVjqaDBlwY7U4Xbt8lPa0VbyCtS7VTbE4lSXYs4KAJynNpe7MSzIFY5w__&Key-Pair-Id=KUT5TJCACFTXG","The Rare Disease Advisory Council reviewed a series of committee updates, legislative outcomes and calendar changes during its meeting.

Mary Caruso, a patient-advocate member of the council, summarized the council’s legislative results: “Four of the six legislative priorities passed,” she said, naming funding for the RDAC, the Katie Beckett provision, a sickle cell measure and insurance coverage for a biomarker as successes. Caruso said two items were tabled: proposed emergency protocols and a proposal to add Duchenne muscular dystrophy to the newborn screening panel; she noted the group was watching related federal developments.

Council members said the RDAC’s funding measure passed and that staff will coordinate with the Department of Public Health on next steps. Leslie Bennett, RDAC cochair, said the executive team will meet with DPH after a staff member’s return in late June to discuss funding implementation and options. Bennett said one option on the table is forming or identifying a nonprofit to collect funds for the council.

Colleen Brunetti, who leads the awareness committee’s mapping work, reported the committee has about six core volunteers compiling an inventory of roughly 100 patient groups, hospitals, research organizations and companies for a statewide resource map. “Our first project is to create a map of rare disease resources in Connecticut,” Brunetti said. The committee aims to complete the map before December and to use it in the council’s annual report to the Connecticut General Assembly.

The council took one formal vote to change its calendar: because the previously scheduled September meeting conflicted with Rosh Hashanah, members voted to move that meeting back one week to Sept. 30. Colleen Brunetti made the motion; Mary Caruso seconded it. The motion carried with an affirmative roll call and no recorded opposition.

Council members also discussed appointment and term confirmations. Bennett said she will send letters to appointing legislators asking them to confirm whether earlier nominations were intended as three- or two-year terms; council members did not object to that approach.

Members reviewed invitations to external events. The National Organization for Rare Disorders offered two funded slots for RDAC members to attend its October meeting in Washington; Global Genes planned a Sept. 3 meeting in Boston and may provide partial support through a biopharma partner. Members were asked to notify council staff if they wished to use either opportunity.

Council leadership reported the death of member Jim Rawlings. Bennett said she would contact the sickle cell community to learn whether the family preferred memorials or donations and noted the council planned a group donation to Michelle House in his honor if the family and community supported that approach. Mary Caruso volunteered to coordinate collection of any donations on behalf of the council.

No new statutory changes were adopted at the meeting. Several items discussed — including funding implementation, conditional waivers for progressive neurogenetic disorders and possible short-term DDS waivers for affected children — will require further agency discussions and likely additional council work over the summer and fall.","Mary Caruso, an RDAC patient-advocate member, told the council four of six legislative priorities passed this session, including funding for the council and a Katie Beckett provision, while emergency-protocol and Duchenne newborn-screening proposals were tabled.","actionData","errors"]

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UConn launches state-based genetic counseling master’s program and asks rare-disease groups for training partnerships

Rare Disease Advisory Council reports legislative wins, launches statewide resource map and moves September meeting