Rare Disease Research Trust
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Funds counselling and diagnostic guidance for people with rare conditions, who in Europe wait nearly five years on average for a correct diagnosis, helping them reach the right specialist centers.
Why this matters in Germany
A disease counts as rare in the EU when it affects no more than one person in 2,000, but there are thousands of such conditions, so together they affect millions of people across the country. Most have a genetic origin, and many first appear in childhood. Because a family doctor may never see a given condition, patients often move from specialist to specialist, collecting misdiagnoses and unnecessary treatments while the illness progresses. Parents describe years of uncertainty before anyone puts a name to their child's symptoms.
Specialized centers for rare diseases, usually attached to university hospitals, now exist across Germany, and genome sequencing can resolve many unexplained cases. The problem is getting to them. Patients and their doctors often do not know which center covers which condition, how to prepare a referral or what the health insurer will pay for. Counselling that helps people assemble their medical history, identify the right center and meet others with the same condition shortens the search and spares families years of fruitless appointments.
What your gift pays for
- Individual counselling that helps patients and families find the right specialist center
- Support assembling medical records and test results before referral to a rare-disease center
- Advice for treating doctors looking for expertise on unfamiliar conditions
- Introductions to patient organizations for people who have just received a rare diagnosis
Organization
ACHSE e.V. (Allianz Chronischer Seltener Erkrankungen) · Germany
Vereinsregister (Sitz Düsseldorf) · No. VR 9638
Founded 2004 · Headquarters: Berlin
Umbrella patient alliance offering counselling and navigation for people with rare or undiagnosed diseases.
How they work: ACHSE speaks for patient organizations covering many different rare conditions and runs a free counselling service open to patients, relatives and doctors, including people still without a diagnosis. Its advisers draw on links with the rare-disease centers and with member organizations that know particular conditions well. In 2010 it co-founded the National Action League for People with Rare Diseases (NAMSE) with the federal health and research ministries, and it represents patients' interests in national and European policy.
Track record: Representing over 130 member organisations, ACHSE runs a central counselling service helping rare-disease patients find diagnoses and specialists, with a dedicated 'Lotsin' since 2008.
✓ Verified by our team on 9 June 2023
Giving in Germany
Labor shortages and migration tie together much of the German list. Language-bridging courses help refugee and migrant youth enter the Ausbildung vocational system, while other funds train new elder-care workers and subsidize home-care visits as formal care places become harder to secure. The range extends to asylum legal aid through PRO ASYL, winter shelter for an estimated 531,600 homeless people, flood repair grants in river valleys, diagnostic guidance for people with rare diseases and string instrument loans for gifted young musicians. Partners include welfare federations such as Caritas and Diakonie alongside the German Red Cross.
9 causes are listed in Germany, each with its own verified organization. $854,499 has been distributed to causes in Germany since 2021.
Our guide to giving in Germany · all 9 causes
In Deutschland Krypto spenden: 9 geprüfte Projekte im Überblick
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How your gift reaches this cause
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- We then convert the funds for this cause and send them to ACHSE e.V. (Allianz Chronischer Seltener Erkrankungen), the organization named above, by bank transfer to its registered bank account, within 24 hours of confirming your donation.
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