aortic dissection¶

Directory of patient organizations, campaigns, and patient-involvement networks relevant to thoracic aortic disease. Verification rule: every entry in the main tables was verified by fetching the organization's own site (or an authoritative page about it) on the access date shown. Organizations that could not be verified are quarantined in the final section. All access dates: 2026-08-27.

Citation form used throughout this layer: (Publisher — "Title", URL, accessed 2026-08-27).

Quick map¶

Organization / campaign	Region	Primary focus	Research involvement
The Marfan Foundation	US (global reach)	Marfan, LDS, VEDS + 10 related conditions	Grants, scientific meetings, study recruitment, Genetic Aortic Network
Loeys-Dietz Syndrome Foundation	US (division of Marfan Fdn)	Loeys-Dietz syndrome	Research grants, biomarker initiatives
The VEDS Movement	US (division of Marfan Fdn)	Vascular Ehlers-Danlos	VEDS Collaborative, grants, scientific meeting
Marfan Trust	UK	Marfan, LDS	Funds medical research; online clinics
Aortic Dissection Awareness UK & Ireland	UK & Ireland	Aortic dissection	DECIDE-TAD (NIHR) family-screening research; co-authors clinical papers
THINK AORTA (campaign)	UK/IE origin; worldwide	ED diagnosis of aortic dissection	Campaign evaluation cited in surgical literature
The Aortic Dissection Charitable Trust	UK & Ireland	Aortic dissection	Funds research; "Aortic Biobank"; "My Aorta My Future"
John Ritter Foundation for Aortic Health	US	Thoracic aortic aneurysm & dissection	John Ritter Research Program; grant program
Aortic Hope	US (45+ countries)	Aortic dissection/aneurysm survivorship	Partner in Think Aorta US; hospital distribution of patient guides
GADA Canada	Canada	Genetic aortic disorders	Research grants; Montalcino Aortic Consortium
Turner Syndrome Society of the US	US	Turner syndrome (incl. aortic dissection risk)	Facilitates TS research participation
Bicuspid Aortic Foundation	US / international	BAV + thoracic aortic disease	Funds genetic research (Univ. of Ottawa)
Stichting Aortadissectie Nederland	Netherlands	Aortic dissection	Recruits national survivor cohorts for published studies
Marfan Hilfe (Deutschland) e.V.	Germany	Marfan, LDS	Promotes study participation (e.g., ConnectPain)
Association Marfans	France	Marfan, LDS & related	Finances research projects (Antioxydants4marfans)
Japan Marfan Association (NPO)	Japan	Marfan, LDS	Patient registration for research
Marfan Association Queensland	Australia (QLD/N-NSW)	Marfan & related CTDs	Fundraises for research
VASCERN HTAD ePAG	EU	Heritable thoracic aortic diseases	Patient advocates embedded in EU reference network research
Aortic Dissection Collaborative	US (PCORI)	Patient-centered AD research agenda	Patient stakeholders co-author research-priority papers

United States¶

The Marfan Foundation¶

Region: US, Port Washington NY; international reach.
Focus: "drives research, education, and support" for genetic connective-tissue and aortic conditions: Marfan, neonatal Marfan, Loeys-Dietz, VEDS, kyphoscoliotic EDS, Stickler, Beals, bicuspid aortic valve, ectopia lentis syndrome, familial aortic aneurysm, MASS phenotype, Shprintzen-Goldberg.
Offers patients: "Ask a Nurse" helpline; connection programs (Marfan Connect, VEDS Connect, LDS Connect, Stickler Connect); crisis support groups; care-provider directory; toolkits; Camp Victory; Walk for Victory events.
Research: research grant funding, scientific meetings, clinical-study recruitment ("Find Study Participants"), and a "Genetic Aortic Network" science/treatment arm. Foundation staff co-author patient-centered research (e.g., education working group of the Aortic Dissection Collaborative — Talutis 2022, PMID 35501043).
Awareness: runs the #LarsonLove Challenge (2026), marking 30 years since Rent creator Jonathan Larson died at 35 of an aortic dissection from undiagnosed Marfan syndrome; participants perform "Seasons of Love" and relay Marfan/dissection warning signs (The Marfan Foundation — "Raise Marfan Syndrome Awareness, Save Lives with the #LarsonLove Challenge", https://marfan.org/2026/04/13/raise-marfan-syndrome-awareness-save-lives-with-the-larsonlove-challenge/, accessed 2026-08-27).
Source: (The Marfan Foundation — homepage, https://marfan.org/, accessed 2026-08-27).

Loeys-Dietz Syndrome Foundation¶

Region: US (Port Washington NY); operates as a division of The Marfan Foundation.
Focus: Loeys-Dietz syndrome information and hope for affected families.
Offers patients: medical information, personal support, emergency preparedness guidance, mental-health resources, care navigation, Sydney Lerman Hospitality Program, story-sharing platform.
Research: funded research grants; biomarker research initiatives; recruiting studies.
Source: (Loeys-Dietz Syndrome Foundation — homepage, https://www.loeysdietz.org/, accessed 2026-08-27).

The VEDS Movement¶

Region: US (Port Washington NY); division of The Marfan Foundation.
Focus: saving lives and quality of life in vascular Ehlers-Danlos syndrome (arterial dissection/rupture risk).
Offers patients: doctor locator, emergency preparedness resources and ED information sheets, virtual support groups, free medical IDs, pregnancy/pediatric resources, Parent Toolkit, VEDS Action Month, CME for clinicians.
Research: VEDS Collaborative, research grants, annual VEDS Scientific Meeting. Staff co-author patient-centered literature (Nishath 2022, PMID 35501040 — telemedicine working group).
Source: (The VEDS Movement — homepage, https://thevedsmovement.org/, accessed 2026-08-27).

John Ritter Foundation for Aortic Health¶

Region: US (Los Angeles CA).
Founding: established after actor John Ritter died in 2003 of a misdiagnosed thoracic aortic dissection; mission "raising awareness and changing outcomes" in thoracic aortic disease.
Offers patients: "Aorta Advocates" peer support (patients, caregivers, bereaved); education programs ("Aorta Basics", "Aorta Academy", "AORTA IQ"); mental-health resources; content addressing aortic disease in the Black community; Aortic Dissection Awareness Week events.
"Ritter Rules": actionable rules to recognize/treat/prevent thoracic aortic dissection, organized as: be your own advocate; access multidisciplinary care; genetics & family (imaging screening of first-degree relatives — "Up to 1 in 5 people" with TAA/dissection have an affected family member); support (anxiety and PTSD named as common); lifelong care (imaging, BP control, staying appropriately active). "Severe pain is the #1 symptom" of acute dissection (John Ritter Foundation — "Ritter Rules", https://johnritterfoundation.org/ritter-rules/, accessed 2026-08-27).
Research: John Ritter Research Program; research grant program with funded grants.
Source: (John Ritter Foundation for Aortic Health — homepage, https://www.johnritterfoundation.org/, accessed 2026-08-27).

Aortic Hope¶

Region: US (Abingdon MD); community across 45+ countries.
Focus: aortic dissection/aneurysm survivorship — "Spreading Hope | Creating Awareness | Providing Support".
Offers patients: free patient guides ("Aortic Disease: The Patient Guide", "Aortic Dissection: The Patient Guide", English/Spanish) distributed in 5,200+ US hospitals in collaboration with Think Aorta US; Hope Mail care packages (~400% growth since 2016); Survivor Series recorded interviews and written stories with a "Where Are They Now?" follow-up strand; Memorial Wall; AHTV programming; Hope Ambassador program.
Research: primarily awareness/support; survivor stories feed Think Aorta US clinician education.
Source: (Aortic Hope — homepage, https://www.aortichope.org/, accessed 2026-08-27).

Turner Syndrome Society of the United States¶

Region: US (Houston TX).
Focus: Turner syndrome — a population with substantially elevated aortic dissection risk; included here for its aortopathy programs.
Aortopathy relevance: distributes a wallet-sized "Cardiac Emergency Alert Card" (QR-coded) so first responders consider and exclude aortic dissection in a person with TS presenting emergently.
Offers patients: clinical practice guidelines (EN/ES), the largest TS conference globally, peer support, provider directory, mental-health resources.
Research: facilitates TS research participation; professional advisory boards.
Source: (Turner Syndrome Society of the US — homepage, https://www.turnersyndrome.org/, accessed 2026-08-27).

Bicuspid Aortic Foundation¶

Region: US-based, explicitly international ("Aortic disease knows no boundaries").
Focus: bicuspid aortic valve and thoracic aortic disease — the most common aortopathy substrate.
Offers patients: education on BAV/TAD, "Our Stories" patient narratives ("Stories of Hope", "Children's Corner"), guidance on appointments and record-keeping, "Life-Long Care" emphasis on ongoing surveillance.
Research: funds genetic research (University of Ottawa named).
Source: (Bicuspid Aortic Foundation — homepage, https://bicuspidfoundation.com/, accessed 2026-08-27).

Aortic Dissection Collaborative (research collaborative, not a membership charity)¶

Region: US; PCORI-funded infrastructure led from the University of Washington.
What it is: a patient-centered outcomes research collaborative for the aortic dissection community: surveys + interviews of people with/at risk for AD (2020), seven working groups (mental health, education, telemedicine, pregnancy, medical management, etc.), a Virtual Research Network, and prioritized research questions. Patient stakeholders are named co-authors across its publications; organization staff (Marfan Foundation, VEDS Movement) sit in working groups (Lee 2022, PMID 35501047; Talutis 2022, PMID 35501043; Nishath 2022, PMID 35501040).
Verification: via PubMed-retrieved publications above (no standalone site fetched).

United Kingdom & Ireland¶

Marfan Trust¶

Region: UK (registered CIO no. 1198847).
Focus: Marfan syndrome and Loeys-Dietz syndrome — support, awareness, and medical research.
Offers patients: information resources, "Marfan and Loeys-Dietz Syndrome Online Clinic", Marfan Matters newsletter, membership, phone/email support line.
Research: funds and undertakes medical research toward better treatment.
Source: (Marfan Trust — homepage, https://www.marfantrust.org/, accessed 2026-08-27).

Aortic Dissection Awareness UK & Ireland¶

Region: UK & Ireland (registered charity no. 1198617). Self-describes as "the national patient charity for Aortic Dissection" and "the voice of Aortic Dissection patients".
Offers patients: patient support (its stated most important charitable activity); Aortic Dissection: The Patient Guide — a free handbook "written by patients, for patients"; patient stories; annual community events; clinician-facing guideline resources.
Research: DECIDE-TAD Programme — NIHR-funded partnership with the University of Leicester on preventing aortic dissection via family screening; charity representatives co-author peer-reviewed papers (e.g., Harky 2020, PMID 32981073, with two charity co-authors). Owns the THINK AORTA® trademark.
Source: (Aortic Dissection Awareness UK & Ireland — homepage, https://aorticdissectionawareness.org/, accessed 2026-08-27; patient stories hub, https://aorticdissectionawareness.org/patients-and-families/patient-stories, accessed 2026-08-27).

THINK AORTA (campaign)¶

Region: UK/Ireland origin; active in US, Canada, Australia, Brazil ("PENSE AORTA"), Spain/Catalonia, Egypt, Italy; posters in 50 languages.
Who runs it: led by Aortic Dissection Awareness UK & Ireland with endorsements from the Royal College of Emergency Medicine, Royal College of Radiologists, American College of Emergency Physicians, and Society for Thoracic Surgery. A US arm (Think Aorta US) partners with Aortic Hope and has a YouTube channel (@ThinkAortaUS).
Problem targeted: "a diagnosis of Aortic Dissection is considered in less than half" of ED presentations; campaign materials cite ~1%/hour mortality in untreated type A and 48% dying before reaching hospital. Slogan: "THINK AORTA and save a life".
Materials: ED/radiology posters, accredited learning modules, first-responder training.
Research footprint: named in the surgical literature as a lever against misdiagnosis (Holmes 2021, PMID 34838743).
Source: (THINK AORTA — campaign site, https://thinkaorta.net/, accessed 2026-08-27).

The Aortic Dissection Charitable Trust (TADCT)¶

Region: UK & Ireland (England & Wales charity no. 1191420; Scotland SC051517).
Focus: uniting patients, families, and clinicians to improve diagnosis, survival, and disability after aortic dissection. Site cites: ~70 people/week face AD in UK & Ireland; 33% misdiagnosed; ~2,000 UK deaths/yr; ~10 lives/week savable with correct diagnosis.
Offers patients: free patient resources; bereavement guide; hereditary screening information for relatives.
Research: funds research; runs "My Aorta My Future", an "Aortic Biobank", a research advisory group; clinician education via "AortaEd", a "Primary Care Field Guide", an "Acute Aortic Dissection Toolkit", and the "Could it be AD?" campaign.
Source: (The Aortic Dissection Charitable Trust — homepage, https://aorticdissectioncharitabletrust.org/, accessed 2026-08-27).

Canada¶

Genetic Aortic Disorders Association (GADA) Canada¶

Region: Canada.
Focus: "Embracing Marfan syndrome and all other Genetic Aortic Disorders" — Marfan, Loeys-Dietz, ACTA2, SMAD3, TGFB2/3, nonsyndromic FTAAD.
Offers patients: community groups and patient stories; per-gene educational resources; Canada-wide clinic directory; management guidelines; webinars (healthy living, transitional care); parliamentary advocacy (2025 House of Commons statement on genetic aortic disorders).
Research: research grants program; participation in the Montalcino Aortic Consortium; supports clinical studies; professional advisory board.
Source: (GADA Canada — homepage, https://gadacanada.ca/, accessed 2026-08-27).

Europe (continental)¶

Stichting Aortadissectie Nederland (SADN)¶

Region: Netherlands.
Focus: aortic dissection; founded and led by people with lived experience, grown from the 2015 peer group "Leven na/met Aortadissectie".
Offers patients: private Facebook peer group (existence noted; contents not accessed), annual patient symposia, patient folders/videos/books, "Uniforme leefstijladviezen na een aortadissectie" (uniform lifestyle advice), personalized cardiac-rehab guidance ("Hartrevalidatie op maat"), "Sport met je hart", a Dutch Think Aorta emergency-awareness course, and the "TRAIN Health Awareness Programma".
Research: functions as a national recruitment network — a 61-survivor nationwide activity/sleep/QoL study was recruited entirely through SADN (Bacour 2025, PMID 39941528).
Source: (Stichting Aortadissectie Nederland — homepage, https://www.aortadissectie.com/, accessed 2026-08-27).

Marfan Hilfe (Deutschland) e.V.¶

Region: Germany.
Focus: self-help organization for Marfan syndrome and related conditions (incl. Loeys-Dietz).
Offers patients: regional support groups, condition-specific online circles, seminars by life stage ("Mit Marfan älter werden" for 40+, "Teenieseminar" for ages 12–17), digital media library, glossary.
Research: promotes participation in studies (e.g., "ConnectPain" chronic-pain project).
Source: (Marfan Hilfe (Deutschland) e.V. — homepage, https://www.marfan.de/, accessed 2026-08-27).

Association Marfans (France)¶

Region: France (founded 1995; volunteer-run; member of Eurordis and Alliance Maladies Rares). Full name: Association Française des Syndromes de Marfan, Loeys Dietz et Apparentés.
Offers patients: care-pathway guidance, emergency cards, administrative/rights support, testimonies, pregnancy and pediatric guidance, adapted-equipment help, physical-activity program ("Bougeons avec Bou"), community program "Marfantastiques!!".
Research: finances research projects (e.g., "Antioxydants4marfans"); encourages study participation.
Source: (Association Marfans — homepage, https://www.assomarfans.fr/, accessed 2026-08-27).

VASCERN — HTAD working group & European Patient Advocacy Group (ePAG)¶

Region: EU (European Reference Network on Rare Multisystemic Vascular Diseases; coordinated from Hôpital Bichat, Paris).
What it is: VASCERN's Heritable Thoracic Aortic Diseases (HTAD) working group is one of its rare-disease working groups, spanning European reference centres (Paris, Ghent, Antwerp, Rotterdam, Hamburg, Stockholm, and others); patient representatives (ePAGs — European Patient Advocacy Group advocates) are embedded in its projects and co-author its research — e.g., a 2026 qualitative survey on pregnancy management in rare vascular diseases in which 17% of respondents were patient representatives (Somalo-Barranco 2026, PMID 42365315).
Patient-facing output (search-listed): the HTAD ePAG's "3 a week campaign" promotes 30 minutes of suitable physical activity 3×/week for people with Marfan and related HTAD; an ePAG-made video explains the patient-advocate role.
Verification caveat: vascern.eu returned HTTP 403 to direct fetches during this session; the entry rests on the PubMed-retrieved VASCERN-authored paper above plus the search-result listing of vascern.eu pages (titles/summaries only). Site content beyond that is [unverified].
URL: https://vascern.eu/ (and https://vascern.eu/network/patient-representation/heritable-thoracic-aortic-diseases-htad-epag/), listed 2026-08-27.

Asia-Pacific¶

Japan Marfan Association (特定非営利活動法人日本マルファン協会)¶

Region: Japan (NPO).
Focus: Marfan and Loeys-Dietz syndromes; core philosophy "情報は命を救う" ("Information saves lives"), with explicit emphasis on aortic dissection/rupture prevention.
Offers patients: educational materials, patient narratives, monthly online meetups ("マーキーカフェ" / Marky Café), an Aortic Symposium (大動脈シンポジウム), and emergency identification cards for high-risk individuals.
Research: patient registration (患者登録) enabling research participation independent of institution.
Source: (Japan Marfan Association — homepage, https://www.marfan.jp/, accessed 2026-08-27).

Marfan Association Queensland¶

Region: Australia (Queensland + northern NSW); volunteer-run, not-for-profit.
Focus: support for people and families affected by Marfan syndrome and related connective-tissue disorders; public awareness of an under-diagnosed condition with life-threatening complications.
Offers patients: peer support network; shared information on diagnosis, management, treatment.
Research: raises funds "used directly for Marfan syndrome resources and research".
Source: (Marfan Association Queensland — homepage, https://www.marfanqld.org.au/, accessed 2026-08-27).

Identified but NOT verified (do not cite until fetched)¶

Organization	Region	URL	Status 2026-08-27
Connective Tissue Disorders Network Australia (CTDNA)	Australia	https://ctdna.org.au/	Connection refused during session; identified via search only
Marfan Network Japan (マルファンネットワークジャパン)	Japan	http://www.marfan.gr.jp/	Search-identified (volunteer-run patient/family group, Nagoya); site not fetched
Heart Foundation NZ (aortic dissection patient stories)	New Zealand	https://www.youtube.com/watch?v=vN39ciGy_Es	General heart charity, not aorta-specific; one AD survivor video seen in search listings

Cross-cutting observations¶

Consolidation: the US landscape has consolidated under The Marfan Foundation umbrella (LDS Foundation and VEDS Movement as divisions), while dissection-survivor support (Aortic Hope, JRF, TADCT, AD Awareness UK&I, SADN) remains condition-centered rather than gene-centered.
Patients as research infrastructure: the strongest orgs have crossed from "support" into research production — NIHR DECIDE-TAD (AD Awareness UK&I), PCORI Aortic Dissection Collaborative (US), SADN cohort recruitment (NL), VASCERN ePAGs (EU), Montalcino consortium (GADA Canada). A 2026 review argues patient organisations should be treated as partners in lifelong post-dissection care (Grewal 2026, PMID 42491301).
The signature campaign form is diagnostic-delay awareness (THINK AORTA and its national clones; TADCT "Could it be AD?"; JRF Ritter Rules; TSS alert card; Japan Marfan Association emergency cards) — a direct patient-community response to the misdiagnosis literature (Lovatt 2022, PMID 34968970; Harris 2011, PMID 21969019).