Creation of the Portuguese Urticaria Patients Association

The campaign aims to finance the creation of the Portuguese Association of Urticaria Patients, with the main objective of increasing the visibility of the disease and defending the interests of patients in Portugal.

There are no specific data for Portugal, but based on international studies it is estimated that chronic urticaria affects up to 1% of the population at any given time, with about 2/3 of the cases having spontaneous urticaria. About 20% of the population suffers at least one episode of urticaria and 0.5 to 1% suffer from chronic urticaria, with an average duration between 1 and 5 years and a higher incidence in women between 20 and 40 years.

This disease affects negatively and significantly the quality of life of patients and is associated with high direct and indirect costs. As a psychologically debilitating disease and with a significant socioeconomic impact, it is essential to create an association to help promote the dissemination of the disease, its causes and treatments while defending the interests of these patients.

About the disease:

Urticaria is the manifestation of a heterogeneous group of diseases and is characterized by the appearance of reddish lesions on the skin that disappear with digital pressure, and which make it very itchy. The lesions last a maximum of 24 hours, regress without any residual injury but are recurrent, appearing in different parts of the body. When deep skin structures are involved, swollen lesions (angioedema) can appear.

According to the European Academy of Allergology and Clinical Immunology (EAACI), urticaria (and / or angioedema) is classified as acute urticaria, if it lasts up to 6 weeks and chronic urticaria (UC) if the duration is equal or longer to 6 weeks. Chronic urticaria can be induced (UCI) if an external factor, physical or not, is identified and chronic spontaneous urticaria (ECU), when an external stimulus is not identified. Thus, there are chronic urticaria induced by cold, pressure, increased body temperature, contact with water, etc., while in the case of spontaneous chronic urticaria studies indicate that in its genesis there may be an autoimmune / autoinflammatory basis.

More information:

[YOUTUBE: P9jAYn3x5RM]

About the author

My name is Mónica Albuquerque, I am 43 years old, I live in Oeiras. I have a master's degree in Marine Ecology and I have been working as a marine biologist, communicator and science educator since 2009. I have been suffering from Chronic Urticaria since early 2017. Chronic Urticaria is a difficult to diagnose disease and therefore, until I knew the name of the disease, I had consulted several doctors and tried different medications. This is very common for patients with the disease, taking years to find the name of their disease, the right doctor to accompany them and the right medication. It is due to the immense difficulties caused by the patients of Urticária Chronic that I became interested in the disease and invested in its dissemination, managing since the beginning of 2019 the Facebook page Urticária Crónica Portugal, as well as creating the Facebook group Urticária Crónica Portugal that has helped patients in throughout the country to obtain information, medical contacts and advice. One of the objectives of the creation of the group was to gather people / contacts for the creation of the Association, which only depends on funding at this moment.

Linkedin: https://www.linkedin.com/in/monica-albuquerque1977/

Budget and due dates

Budget:

Campaign Goal - 1500 €

PPL commissions and partners (*) - 138.38 €

Value for the creation of the Association: € 1361.63

- Certificate of Admissibility of Denomination - 75 to 150 €

- Holding of Constitutive Assembly - Meeting of the general constitutive assembly in which the interested members participate and which is essentially intended to deliberate the constitution of the association and to approve the respective statutes, as well as to mandate one or more associates for the celebration of the public deed. The meeting, including the appointment of the representatives (s), will be recorded in the minutes. - 50 to 100 € (room reservation)

- Public Deed and Registration - 350 to 500 €

- 1st General Assembly for election of corporate bodies - 50 to 100 € (room reservation)

- Bank account creation - minimum amount required by the bank to create an Association account - 500 € (which can then be used, for example, when creating the website)

- Registration in finance - free

- Registration and website creation - 100 eur

Extra amounts raised in this campaign will be deposited in the association's account and used in the first activities of the association.

Calendar

Fundraising - 30 days

Admissibility Certificate of Designation - September 2020

Constituent Assembly held - September 2020

Public Deed and Registration - October 2020

General Assembly for election of governing bodies - October 2020

Bank account creation - November 2020

Registration in finance - November 2020

(*) PPL commission, which is 5% + VAT. The second is 2.5% + VAT, and serves to cover the fees of payment partners (PayPal, ATM References, etc.).

Images