| rirosz.hu | Ritka és Veleszületett Rendellenességgel Élők Országos Szövetsége (RIROSZ) | The RIROSZ website provides comprehensive information in Hungarian about rare diseases, managed by the organization and its affiliated groups. The website offers resources and support for patients with rare diseases and their families, including disease descriptions and treatment guidelines. RIROSZ aims to inform and assist individuals with rare diseases and their surroundings, facilitating timely access to accurate and professional information and appropriate healthcare, social, and educational services. | Society → Social Issues 587 | rare disease 23 patient support 30 social services 190 volunteer 591 donation 605 healthcare 2182 | |
| smahun.hu | SMA Magyarország Alapítvány | The SMA Magyarország Alapítvány (Foundation) is dedicated to combating Spinal Muscular Atrophy (SMA). The organization provides information, resources, and support for individuals and families affected by SMA. It offers guidance on care, rehabilitation, and treatment options for SMA patients. | Society → Social Issues 587 | foundation 919 rehabilitation 1201 treatment 2331 | |
| mhe.hu | Magyar Hemofília Egyesület | The Magyar Hemofília Egyesület (MHE) is a Hungarian organization founded in 1990 dedicated to supporting individuals and families affected by hemophilia. The MHE serves as the Hungarian representative for the World Federation of Hemophilia and the European Hemophilia Consortium, providing information and resources related to hemophilia. The website offers information about hemophilia, including its description, treatment options, medications, and potential complications. | Society → Social Services 1667 | treatment 2331 family 6551 community 10128 | Balatonalmádi District → Balatonakarattya 109 |
| kisemberek.hu | Dávid Kisemberek Társasága | The Kisemberek Társasága (Little People Society) is a non-profit organization dedicated to supporting individuals with achondroplasia and their families. The organization focuses on combating social prejudices faced by individuals with achondroplasia, providing support, and advocating for their rights. They offer a range of services including counseling, sports programs, legal assistance, and career guidance to help individuals with achondroplasia thrive. | Social Issues → Disability Rights 63 | advocacy 161 disability 375 child 3543 family 6551 | Kecskemét District → Kecskemét 2981 |
| szabolcszoltan.hu | Dr. Ágg Bence | This website is the official online presence of Prof. Dr. Szabolcs Zoltán, a cardiac surgeon. The site provides information and resources related to cardiac surgery and the Marfan syndrome. It offers details on surgical procedures, preparation, and post-operative care. | Essentials → Health 18880 | surgery 615 research 1480 healthcare 2182 | District XII → Krisztinaváros 98 |
| mpstarsasag.hu | Magyar Mukopoliszaccharidózis Társaság | The Magyar Mukopoliszaccharidózis Társaság (MPS Társaság) is a Hungarian organization dedicated to supporting families affected by mucopolysaccharidoses (MPS). The website provides information about various MPS subtypes, including Hurler/Scheie, Hunter, Sanfilippo, and Morquio syndromes, as well as other related metabolic diseases. The organization hosts regular conferences and events, such as the MPS Conference and the Rare Day event, to raise awareness and foster connections among patients and families. | Essentials → Health 18880 | rare disease 23 research 1480 family 6551 | Sopron District → Sopron 1895 |
| duchenne.hu | Gyógyító Jószándék Alapítvány | The Gyógyító Jószándék Foundation is a non-profit organization dedicated to supporting children and families affected by Duchenne muscular dystrophy (DMD) and SMA. The foundation provides comprehensive assistance, including medical support, assistive devices, family support, and therapeutic interventions like massage and physical therapy. A key focus is on organizing summer camps and family weekends for children and families impacted by these conditions, offering recreational and social opportunities. | Lifestyle → Social 216 | therapy 3179 child 3543 family 6551 | Szob District → Nagybörzsöny 53 |
| gyogyitjuk.hu | Gyógyítjuk a Gyermekeket Alapítvány | The Gyógyítjuk a Gyermekeket Foundation is a Hungarian non-profit organization dedicated to supporting children and families affected by muscle diseases and disorders. Founded in 2014, the foundation provides comprehensive assistance to children with conditions like myopathy, Duchenne muscular dystrophy, Becker syndrome, and SMA, including medical care and rehabilitation. The organization’s mission is to improve the quality of life for these children and their families through medical support, equipment provision, and psychosocial assistance. | Healthcare → Medical Services 2396 | disability 375 medical 499 childhood 781 healthcare 2182 | |
| egyuttmarkert.hu | Pénzes Márk Gyógyulásáért Alapítvány | This website details the efforts of a foundation dedicated to supporting the treatment of Pénzes Márk Dániel, a child suffering from Duchenne muscular dystrophy. The Pénzes Márk Gyógyulásáért Alapítvány (Foundation for Pénzes Márk's Recovery) aims to raise funds for a life-saving treatment for Duchenne muscular dystrophy in the United States and Dubai. The foundation was established by Márk’s parents with the goal of providing financial support for his specialized medical care, which currently has limited availability. | Social Services → Community Support 596 | hope 80 childhood 781 treatment 2331 health 6798 | |
| bbsbarnabas.hu | BBS Barnabás Gyógyulásáért Alapítvány | This website describes the BBS Barnabás Gyógyulásáért Alapítvány, a foundation established to support Buza Barnabás, a child with Bardet-Biedl syndrome. Bardet-Biedl syndrome is a rare genetic disorder characterized by progressive degenerative conditions and impacting multiple systems. The foundation’s primary goal is to finance Barnabás’s specialized treatment abroad, covering associated medical costs, travel, accommodation, and specialized dietary needs. | Essentials → Health 18880 | developmental therapy 10 medical support 11 genetic disorder 12 rare disease 23 | Sümeg District → Ukk 125 |
| adin.hu | Együtt Ádin Kezét Fogva Alapítvány | The Együtt Ádin Kezét Fogva Alapítvány aims to provide gene therapy for children with Duchenne syndrome. The foundation seeks to raise 1.3 billion forints to treat children like Ádin, who were diagnosed with the rare genetic disease. Following Ádin's successful treatment, the foundation now focuses on supporting other children with Duchenne syndrome and their families. | Social Services → Community Support 596 Social Services → Volunteering 102 | medical support 11 genetic disorder 12 rare disease 23 | Debrecen District → Debrecen 6321 |
| smaegyesulet.hu | SMA Egyesület | SMA Egyesület is a Hungarian organization dedicated to supporting individuals with Spinal Muscular Atrophy (SMA). The website provides information about SMA, treatments, and helpful resources for patients and their families. It includes news, press monitoring, and event listings related to SMA support and awareness. | Essentials → Health 18880 | awareness 272 | |
| romcon.hu | ROMCON | The ROMCON conference, rebranded as ROMCON 2025, will be held in Pécs, Hungary. The event focuses on rare diseases and aims to highlight their research and treatment. Attendees can present their research, engage in professional discussions, and build international connections. | Events → Conferences 187 | disease 113 conference 680 collaboration 818 research 1480 innovation 4150 | Pécs District → Pécs 4896 |
| huntington.hu | Magyar Huntington Társaság | The Magyar Huntington Társaság provides advocacy for individuals affected by Huntington’s disease. The organization offers support and assistance to those with Huntington’s disease and their families. The website aims to disseminate information about Huntington’s disease, a genetic disorder affecting the central nervous system. | Essentials → Health 18880 | genetic disorder 12 rare disease 23 patient support 30 neuroscience 40 research 1480 | |
| akekrozsa.hu | Agot Bence | This website is a blog maintained by Arany-Kovács Rozália, who has been seeking a correct diagnosis for a rare genetic disease for 39 years. The blog aims to raise awareness about rare genetic diseases and to encourage early diagnosis and referral to specialized institutions like the Rare Genetic Diseases Institute. It highlights the significant number of people in Hungary and globally affected by rare diseases, many of whom suffer due to delayed or incorrect diagnoses. | Business → Internet 7893 | medical support 11 genetic disorder 12 rare disease 23 | |
| lazarlevente.hu | Lázár Levente -Legyőzünk Duchenne Alapítvány | Lázár Levente is a 5-year-old boy diagnosed with Duchenne muscular dystrophy. The primary goal is to raise funds for life-saving gene therapy to cover travel and medical expenses. The foundation, Lázár Levente -Legyőzünk Duchenne Alapítvány, was established in 2021 to support his treatment. | Essentials → Health 18880 | hope 80 childhood 781 foundation 919 treatment 2331 | |
| mentsukmegbenit.hu | Tündérkör Alapítvány | This website is dedicated to raising funds for Micskó Benjámin, a four-year-old boy diagnosed with a severe, currently incurable form of Duchenne muscular dystrophy. Benjámin’s parents are seeking financial support for a gene therapy treatment, the Elevidys, developed by Sarepta in the United States, which costs approximately 1.3 million forints. The treatment aims to slow down the progression of the disease and prevent Benjámin from becoming wheelchair-bound and needing respiratory support. | Business → Healthcare 3598 | medical treatment 18 rare disease 23 fundraising 72 childhood 781 | Hungary → Budapest 53962 |
| leomosolyaert.hu | Leó Mosolyáért Alapítvány | Leó Mosolyáért Alapítvány aims to improve the quality of life for individuals affected by a rare genetic condition. The foundation focuses on enhancing the well-being of a child diagnosed with a rare and severe genetic illness. The website provides information about a specific genetic condition characterized by epilepsy and documented in only six cases globally. | Health → Children’s Health 62 | epilepsy 13 medical research 16 childhood 781 | Hungary → Budapest 53962 |
| immunhiány-mibe.hu | Magyarországi Immunhiányos Betegekért Egyesület | The Magyarországi Immunhiányos Betegekért Egyesület (MIBE) is a Hungarian association for individuals with immunodeficiency. The organization provides information and resources related to immunodeficiency diseases and their impact, particularly during the COVID-19 pandemic. MIBE hosts online events, including webinars and lectures, focusing on topics such as immunoglobulins, vaccinations, and COVID-19's effects. | Medical Services → Immunology 12 | covid-19 60 vaccination 74 patient 342 healthcare 2182 | Debrecen District → Debrecen 6321 |
| liberatelife.hu | Swedish Orphan Biovitrum AB (publ) | Liberate Life is Sobi’s vision for the future of hemophilia, aiming to transform the lives of people living with rare diseases. The initiative challenges the current state of hemophilia care and seeks to inspire individuals living with the condition to pursue fulfilling lives beyond their illness. The website highlights the experiences of several individuals with A-type hemophilia who are actively pursuing personal goals and achievements. | Health → Chronic Diseases 15 | rare disease 23 wellbeing 638 lifestyle 1847 health 6798 | Hungary → Budapest 53962 |
| abelgyogyulasaert.hu | Béres Ábel Gyógyulásáért Alapítvány | This website promotes an initiative to raise funds for Béres Ábel, a six-year-old boy with Duchenne muscular dystrophy. The Béres Ábel Foundation seeks donations to cover the cost of a potentially life-saving gene therapy for Ábel, which requires 1.3 billion forints. Ábel's story details his diagnosis, treatment, and the challenges associated with his rare genetic condition. | Social Services → Community Support 596 | disease 113 childhood 781 foundation 919 treatment 2331 | |
| fabryalapitvany.hu | Fabry-betegekért Alapítvány | This website is dedicated to individuals affected by Fabry disease, a rare genetic disorder. The foundation aims to raise awareness about Fabry disease and connect patients with resources and support. The organization's primary goal is to bridge information gaps related to the disease and improve patient outcomes. | Mental Health → Support Groups 24 | disease 113 patient 342 foundation 919 community 10128 | |
| polio.hu | Magyar Polio Alapítvány | This website is an archive dedicated to Polio and Post-Polio Syndrome (PPS). The site provides news, articles, and information related to Polio, PPS, and the European Polio Union (EPU). It features updates on the Magyar Polio Alapítvány’s activities, including partnerships and achievements. | Health → Disability 60 | rehabilitation 1201 history 2873 | Hungary → Budapest 53962 |
| hano.hu | Magyarországi ANGIO-ÖDÉMÁS Betegek Egyesülete | The Magyar Hungarian Angio-Edema Patients Association supports individuals with hereditary angioneurotic edema. The organization aims to preserve health, prevent disease, and provide social support to patients with angioedema. It facilitates connections among patients, offers experience sharing through events and workshops, and maintains communication with related organizations and authorities. | Society → Social Issues 587 | disease 113 patient 342 research 1480 | Budakeszi District → Budaörs 1658 |
| tsc.hu | Magyar Sclerosis Tuberosa Alapítvány | The Magyar Sclerosis Tuberosa Alapítvány (Hungarian Sclerosis Tuberosa Foundation) provides support and resources for individuals and families affected by tuberous sclerosis complex (TSC). The organization hosts various events and programs, including family days, online support groups, and informational meetings, aimed at raising awareness and offering guidance. Recent initiatives include a grant-funded program focusing on parental support, a collaborative project with multiple foundations, and updated informational materials about TSC. | Essentials → Health 18880 | genetic disorder 12 rare disease 23 family support 152 neurology 202 mental health 1356 | Hungary → Budapest 53962 |
| criduchat.hu | Cri Du Chat Baráti Társaság | The Cri Du Chat Baráti Társaság website provides information about the Cri du chat syndrome. The website features a call for submissions for an anthology showcasing personal stories from individuals and families affected by Cri du chat syndrome. The organization offers resources and publications related to Cri du chat syndrome, including books and informational pamphlets. | Free Time → Lifestyle 30577 Essentials → Health 18880 | disability 375 writing 400 mental health 1356 community 10128 | Hungary → Budapest 53962 |
| porphyria.hu | Magyar Porphyria Egyesület | The Magyar Porphyria Egyesület (Association) supports individuals affected by porphyria in Hungary. The organization provides information and resources for patients and healthcare professionals dealing with porphyria. The Magyar Porphyria Alapítvány (Foundation) offers financial and material support for porphyria research and treatment. | Essentials → Health 18880 | medical center 68 patient 342 foundation 919 | Hungary → Budapest 53962 |
| uvegcsont.hu | Üvegcsontú Betegekért Közhasznú Alapítvány | The Üvegcsontú Betegekért Közhasznú Alapítvány is a non-profit foundation dedicated to supporting individuals affected by Osteogenesis Imperfecta (OI). The foundation aims to connect OI patients, share experiences, and provide assistance to those navigating the challenges of this rare disease. The organization seeks to establish collaborative relationships with hospitals and physicians specializing in OI treatment both domestically and internationally. | Essentials → Health 18880 | rare disease 23 foundation 919 rehabilitation 1201 | |
| pibe.hu | PIBE Primer Immunhiányos Betegek Egyesülete | PIBE is an association for patients with primary immunodeficiency diseases in Hungary. The website provides information about primary immunodeficiency, professional forums, and resources for interested individuals. It features news and events related to immunodeficiency research and patient support. | Essentials → Health 18880 | patient 342 foundation 919 research 1480 healthcare 2182 | |
| vhl.hu | Magyar VHL Társaság | The Magyar VHL (von Hippel-Lindau) Society was founded in 1999 as a public benefit organization. The society's primary focus is on individuals affected by the VHL syndrome, providing support, information, and regular medical checkups. VHL syndrome is a rare genetic disorder characterized by abnormal blood vessel growth in various organs. | Essentials → Health 18880 | rare disease 23 registry 46 genetics 120 medical 499 | Hungary → Budapest 53962 |
| turnerszindroma.hu | Turner-szindróma.hu | This website provides information and support for parents and individuals affected by Turner syndrome. It focuses on medical knowledge, personal stories, and resources for parents, offering a community platform for those navigating the complexities of the condition. The site aims to educate parents and caregivers about Turner syndrome, emphasizing the importance of seeking medical expertise and proactive management. | Health → Medical Ailments 552 | rare disease 23 medical 499 parenting 638 health 6798 | Sopron District → Sopron 1895 |
| hasadek.hu | Inverse Hungary Kft. | HASADEK.HU is a Hungarian public association dedicated to supporting children born with cleft lip and palate. The organization provides information, resources, and a forum for families and individuals affected by cleft lip and palate. HASADEK.HU operates a family club called "Mosolyogj Bátran" offering social and meeting opportunities for children, adults, and their families. | Society → Social Issues 587 | family 6551 | Edelény District → Szendrő 35 |
| dravet.hu | Dravet Szindróma Magyarország Egyesület | This website provides comprehensive and up-to-date information about Dravet Syndrome (SMEI). It serves individuals, families, and healthcare professionals affected by this rare epilepsy disorder. The site offers helpful resources and documentation related to Dravet Syndrome. | Essentials → Health 18880 | epilepsy 13 rare disease 23 | |
| adiert.hu | ÖSSZEFOGUNK ÁDIÉRT Alapítvány | This website supports Ádám, a child diagnosed with Duchenne muscular dystrophy, and aims to raise funds for his treatment. The ‘Összefogunk Ádiért’ Foundation seeks to provide Ádám with the necessary treatments, therapies, and care to improve his quality of life. Ádám requires a specialized gene therapy, Elevidys, costing approximately 1.1 billion forints (around $2.9 million), currently available in the US and Dubai. | Healthcare → Medical Equipment 639 | medical treatment 18 charity 523 childhood 781 | |
| felnottszivhiba.hu | Felnőttkorú Veleszületett Szívbetegek Alapítványa | The Foundation for Adult Congenital Heart Disease patients provides support and information. The organization focuses on cataloging and tracking adults with congenital heart disease in Hungary. The Foundation aims to offer assistance to patients and their families regarding reproductive health. | Essentials → Health 18880 | heart disease 18 medical professionals 19 patient support 30 foundation 919 | |
| kiarakulonoselete.hu | Kiara különös élete | This website chronicles the life of Kiara, a young girl with a rare genetic condition, GAND syndrome. Kiara, the only GAND-syndromas child in Hungary, experiences daily challenges and ongoing development. The site details Kiara's journey through therapies like DSZIT and rehabilitation, alongside her progression towards independence. | Family → Children 151 | child 3543 family 6551 health 6798 | District IX → Kőbánya-Orczy Neighborhood 336 |