9 rare diseases family / day in Sweden

In the beginning of June, 21 people from the families of Latvia spent less than a week in a respite trip to the Swedish island Öland. There were common hours on the trip, which gave parents the opportunity to focus on brothers and sisters, excursions, creative and therapeutic activities, and a small pilgrimage and a joint solemn with the participants’ own concert at the local church. As the participants of the program admit, the therapeutic effect of self -help, new friends, contacts that remain after the end of the trip were very important.

« We accept each other without prejudice and this is a huge relief. I feel like my own, though I didn’t know anyone before the trip. It is one of the greatest values ​​of this trip, » said Diana Kristaps, a member of the group. The Diana family grows a son with rare Ahondroplasia.

The respite trip started from a symbolic place for every family faced with a rare illness – Children’s Hospital, where the group was also accompanied by inspiration by Renāte Snipe, Head of Medicine Administrative Administrative Disease Coordination Center Sabine Laktiņa and palliative Care Service. Children and teenagers received symbolic gifts of courage. Similarly, the symbol of Latvia’s power was taken from Latvia to Sweden – a bribe of rye bread.

The Latvian Rare Disease Alliance established a program called « Breathe Rare Diseases for Families » and in cooperation with the Latvian Children’s Support Fund opened the possibility of donations in April 2025. Already in June, the next activities will continue as part of the respite program, which will breathe to other families – in cooperation with the creative association « Ants Metropole » some families will have the opportunity to visit the « Feeling Garden ».

« The activities of the respite program and the ability to organize them depends on the support of the donors. The program aims to give respite and for a moment undivided attention to parents and brothers and sisters whose daily life is exposed to a child with rare diseases. Member, one of the organizers of the trip Sanita Sinica.

The program has a participation criteria that are adapted to each event – for example, the age of the children. One of the most important criteria is to participate in other similar activities, camps, trips that have been organized at the expense of donors. Priority is given to those who have not received it so far.

The first trip of the Rare Disease Families Program gave us the opportunity to experience supporters and donors in both Latvia and Sweden – « I. Bite Farm » Valmoniras « in Kekava Parish, Andrejs Eglītis Latvian National Foundation, Tourism Agency » AP Saul « , » Moon Pharmacy « , Mada Riga, Mada Riga Administration, Stockholm and Eskilstun Church, LELB in America, Riga Evangelical Church, Latvian Deaconic Association in Vace, Hamilton Christ’s Church and individuals (Canada) and many many private donors. Special thanks to the group members also say volunteer assistants!