Protecting and improving the quality of life
of people affected by rare diseases
Need advice or interested in your welfare rights?
Thank you for your understanding
Your HSRB Team
Your HSRB Team
Dear members,
You can contact us by calling our phone number: 01/2441-393.
You can send inquiries to the email address: rijetke.bolesti@gmail.com
or call the phone numbers:
Social worker: 091/444-3038
(Mon – Fri from 8 AM to 12 PM)
Psychologist: 099/659-6275
(pon, sri, pet 8:30-12:30h, Tue & Thu 12 PM – 4 PM)
You can contact us by calling our phone number: 01/2441-393.
You can send inquiries to the email address: rijetke.bolesti@gmail.com
or call the phone numbers:
Social worker: 091/444-3038
(Mon – Fri from 8 AM to 12 PM)
Psychologist: 099/659-6275
(pon, sri, pet 8:30-12:30h, Tue & Thu 12 PM – 4 PM)
Become a member
Membership in the Alliance is free.
The Alliance brings together over 1,000 individual members affected by rare diseases and their family members, as well as 36 nonprofit organizations working for the well-being of those affected by rare diseases
Volunteer
You can follow volunteer opportunities on our website, Facebook page, and the Zagreb Volunteer Center's website. If you’d like to join us, feel free to reach out!
Support Our Work - Donate
IBAN: HR5023600001101571337
Our Services
Psychological Support
Psychological support for rare disease patients and their family members.
Counseling on Rights
Professional support for rare disease patients in exercising their social welfare rights.
Advocating for patient rights, raising public awareness and strategic goals setting.
We are driven by desire for
Promoting Humanity and Social Inclusion
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Stay informed about the news and activities of the Alliance
Our Partners
Over 20 years of collaboration with associations and rare disease patients
“
The Alliance continuously follows the growth and development of my child with Noonan syndrome. Thank you for your dedication, suggestions, and advocacy for the rights of children with rare diseases. You have made information, services, and rights within the pension, healthcare, and social systems more accessible to us.
Thank you for everything!
Thank you for everything!
Iva
Mother of a boy affected by Noonan syndrome
“
The Alliance has been collaborating with the Croatian Association of Scleroderma Patients for the past 10 years. Thank you for joint media promotions, communication with state institutions, and the implementation of shared projects.
Proud of the 3rd Guide for people with scleroderma, 'Even Depression Won’t Take Away My Smile,' and our collaboration with psychologist Sanja Bulog. We sincerely thank you for every conversation and the support provided to people with scleroderma across Croatia.
Proud of the 3rd Guide for people with scleroderma, 'Even Depression Won’t Take Away My Smile,' and our collaboration with psychologist Sanja Bulog. We sincerely thank you for every conversation and the support provided to people with scleroderma across Croatia.
Jadranka Brozd
President of HUOS, Physiotherapist
“
Receiving a diagnosis remains a challenge for patients with rare diseases. The Alliance is always the right place for these patients and their families to turn to - not only for help with diagnosis but also for support in many other aspects
It is a place where, after facing a diagnosis, they will always find reliable information on all aspects of the disease. But most importantly, in those crucial moments, they will realize that they are not alone.
It is a place where, after facing a diagnosis, they will always find reliable information on all aspects of the disease. But most importantly, in those crucial moments, they will realize that they are not alone.
Prof. Dr. Sc. Ksenija Fumić
Specialist in Medical Biochemistry
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