Take Care (R) Of The Rare

Creation of Mutual Help Groups (GAM) for parents / caregivers of patients with rare and mental illness.

The Cuare (R) dos Raros project consists of the creation and implementation of Mutual Help Groups (GAM) at the Raríssimo Norte Center, Delegation of the Raríssimas North, for parents and other family members / caregivers of mentally and rare patients.

The presence of a child with a rare disability / illness requires the family to be organized to care for them and their adaptation will depend greatly on their members' previous experiences, learnings and personality.

It is therefore urgent to find solutions for psychological and social support, as well as to provide these families with effective means and tools to overcome the problems mentioned above.

Over the course of 12 months it is intended to set up these parent / caregiver groups, promoting their interaction, interspersing and complementing this group dynamic with specific training, through the guidance of one (or more) professional.

Objectives:

• Promote the real inclusion of children with rare diseases by empowering parents and / or caregivers;
• Enable project participants to acquire active listening skills, dialogue, help signaling, integration of criticism, clarification of different points of view and conflict management by sharing common personal issues, as well as knowledge in the area of social care and right.

Description of activities:

According to the expression of interest and registration, we will organize parent and caregiver groups. These groups will be spaces for the acquisition of parenting skills, discussion of problems and opportunities, sharing of ideas and experiences and even recreational activities.

These sessions will be scheduled according to the diagnosis of the needs and concerns of each group of parents. The skills to be acquired, the subjects to be debated can only be defined after knowing the characteristics of the group elements, which are quite heterogeneous in perspective.

The groups will meet one to two times a month.

Number of Beneficiaries:

30 to 60 Parents / Caregivers of Citizens with Rare Disease and / or Mental Impairment (2 to 4 15-member Mutual Help Groups)

Start Date and Duration:

The project starts on 1 January 2020 and will last for 1 year.

How it can help:

If you would like to help us with your time, know-how or financial support get more information from the Raríssimo Norte Center, Maia, at 229 608 463 or email porto@rarissimas.pt.

In the name of our rare ones, thank you.

About the author

Raríssimas - National Association of Mental and Rare Disabilities is an IPSS and NGO, founded in April 2002, which works with patients and family members who live closely with Rare Diseases. At this moment, we are represented at the national level, which includes the Raríssimo Norte Center, in Maia, which, through a multidisciplinary team, develops individual therapeutic programs that focus on the motor, cognitive and sensory development of the users, as well as providing support to their families.

We are currently accompanying 30 patients who regularly come to our facilities for rehabilitation.

Budget and due dates

Budget:

The Mutual Help Groups (GAM) project presupposes the support of qualified technicians as a psychologist and trainer that we will have to hire. In addition to these expenses, we will incur ongoing expenses resulting from this initiative, such as the budget, expenses with the creation of communication media, promotion and dissemination of initiatives and rental of facilities.

The value presented also foresees the cost of creating the manual for the dissemination of the project.

For the creation of 2 to 4 15-member Mutual Help Groups with psychological / social support sessions per month, and specific disability and rare disease training for parents / carers we need to raise € 19500.

Schedule:

Planning, resource hiring, contacting / scheduling with caregivers and materials procurement activities will take place in January. We plan to start with the February meetings and trainings that will run until the end of December. After this, we will have one month for project evaluation, preparation of the manual with the results and dissemination of the project / results obtained.

Whenever appropriate, we will disclose the actions on Raríssimas' communication platforms, as well as other means deemed relevant.

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