This site is free. Research into M35.4 is not.
Rare diseases are not profitable for the pharmaceutical industry. Research into M35.4 exists thanks to foundations, universities and patients who direct money to where discoveries are made. Here is where.
~300 cases.
Zero randomised
clinical trials.
A pharmaceutical company invests in a drug when it can sell it to millions of patients. M35.4 has fewer than 300 well-documented cases worldwide. That maths does not work.
So everything we know about treatment comes from case series, retrospective analyses and — above all — research foundations that fund what the market won't invest in. Universities, rheumatologists and patient organisations are filling that gap. They need support.
If you have the means to donate to medical research — below you'll find places where money goes directly into rare connective-tissue disease.
Where the money
for research goes.
EULAR
European rheumatology federation — patients, scientists and clinicians under one roof. Sets diagnostic and treatment standards for rheumatic diseases, including rare ones.
/ eular.org
Inserm
French national institute for medical research. Runs Orphanet — the global database of rare diseases, where M35.4 has its own entry (ORPHA:3165).
/ inserm.fr
Fondazione Telethon
Italian foundation funding research into rare genetic diseases. Patient-driven — lives off donations from the annual Telethon broadcast, no corporate backing.
/ fondazionetelethon.it
ISCIII
Carlos III Spanish National Health Institute. Runs CIBERER — the research network funding projects on rare diseases, including connective-tissue conditions.
/ isciii.es
Wellcome Trust
Independent British biomedical charity. Funds hundreds of small research projects — from basic immunology to rare autoimmune disorders.
/ wellcome.org
Robert Koch-Institut
German federal public-health institute. Monitors infectious and rare diseases, publishes epidemiological reports — including on connective-tissue conditions.
/ rki.de You can help
in other ways too.
Translate an article
The site is in 6 languages, but only the Polish version has full articles. One article translated by a native speaker saves dozens of hours of work.
Share your journey
Every diagnosis story on this site is a map that the next person can follow faster. Yours might save someone a year without answers.
Content review
Are you a rheumatologist, dermatologist or pathologist? Read one article and tell us what's inaccurate. We fix it fast and cite the source.
Send a link to a doctor
Many GPs have never heard of M35.4. One link from a patient can change that for subsequent patients in that practice.
Find an organisation
doing the work.
Start typing to search the database of 10 organisations — name, country or focus area.
- EU rare-disease alliance/ eurordis.org
EURORDIS
EURORDIS — Rare Diseases Europe
Non-governmental alliance of more than a thousand rare-disease patient organisations across over seventy countries. Lobbies EU institutions on orphan-drug policy, runs the Rare Barometer surveys and represents patients in EMA committees. Headquartered in Paris with an office in Brussels.
- EU connective-tissue ERN/ reconnet.ern-net.eu
ERN ReCONNET
European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases
One of the twenty-four European Reference Networks funded by the European Commission to connect expert centres for rare diseases. Covers systemic sclerosis, lupus, Sjögren's syndrome, mixed connective-tissue disease and related rheumatic conditions. Coordinated from the University Hospital of Pisa.
- USA rare-disease federation/ rarediseases.org
NORD
National Organization for Rare Disorders
US patient-driven federation representing rare-disease patient organisations across all rare conditions. Operates a rare-disease database, funds research grants and runs patient-assistance programs. Headquartered in Connecticut with a Washington advocacy office.
- UK arthritis & MSK research/ versusarthritis.org
Versus Arthritis
Versus Arthritis
UK research charity formed in 2018 from the merger of Arthritis Research UK and Arthritis Care. Funds laboratory and clinical research on arthritis and musculoskeletal conditions, runs patient support services and lobbies for policy change. Headquartered in Chesterfield with operations across the UK.
- EU scleroderma & fibrosing/ fesca-scleroderma.eu
FESCA
Federation of European Scleroderma Associations
Umbrella federation of national scleroderma patient associations across Europe. Coordinates World Scleroderma Day, supports cross-border patient advocacy and partners with EULAR and ERN ReCONNET on systemic-sclerosis policy. Particularly relevant to fibrosing connective-tissue conditions adjacent to eosinophilic fasciitis.
- France rare-disease research funder/ afm-telethon.com
AFM-Téléthon
Association Française contre les Myopathies — Téléthon
French patient-driven association founded by parents of children with neuromuscular and rare genetic diseases. Funds research through the annual Téléthon broadcast and operates Généthon, a non-profit gene-therapy laboratory in Évry. Has co-funded several first-in-human gene-therapy trials for rare disorders.
- UK rare-disease patient alliance/ geneticalliance.org.uk
Genetic Alliance UK
Genetic Alliance UK
UK umbrella charity representing patient organisations affected by genetic, rare and undiagnosed conditions. Coordinates policy advocacy with the NHS, the Department of Health and Social Care, and NICE, and runs the SWAN UK community for families with syndromes without a name. Based in London with member organisations across all four UK nations.
- Italy rare-disease federation/ uniamo.org
UNIAMO
UNIAMO Federazione Italiana Malattie Rare
Italian Federation for Rare Diseases — national umbrella of patient organisations across Italy and member of EURORDIS. Coordinates patient representation on the Italian National Plan for Rare Diseases and engages with the Istituto Superiore di Sanità's rare-disease registry. Based in Rome with regional contact networks.
- Austria rare connective-tissue federation/ debra-international.org
DEBRA International
Dystrophic Epidermolysis Bullosa Research Association International
Global federation of national DEBRA charities supporting people living with epidermolysis bullosa, a rare connective-tissue disorder affecting the skin's anchoring proteins. Coordinates international research collaborations and clinical-practice guidelines. Member charities operate in more than fifty countries.
- EU rare-disease research consortium/ erdera.org
ERDERA
European Rare Disease Research Alliance
European co-funded partnership launched in 2024 as successor to the EJP RD programme. Coordinates rare-disease research funding across EU member states, supports data infrastructures and trains the next generation of rare-disease researchers. Operates through national funding agencies and academic partners across Europe.
No organisations match your search.
Know an organisation that's missing here? Have another idea for how this site could help?