#KeyResearch CDG research led by CDG families. Help from ALL families is needed. Complete the online questionnaire until 21 December 2016 available in 4 languages at http://www.apcdg.com/project-cdg--liver.html .
All patient ages and situations are considered: Patient with liver affectation, Patient without liver affectation or Situations in which patient/parents do not know if liver is affected. Take advantage of this opportunity to increase knowledge in one of the major areas unknown among professionals.
It takes 10-15 minutes!
It is offical: The European Reference Networks (ERNs) have been approved! This is a trailer-blazer in #RareDisease heathcare, diagnosis and treatment.
This unique european initiative means to tackle rare disease at an european level, bringing patients closer to the treatments and care they require!
Because Together er are MORE and Better!
Read the official press release HERE
The Portuguese Association for CDG (APCDG, www.apcdg.com) and ©NABIA Olive Oil Cosmetics (http://bit.ly/2fjLn84) have joined efforts and are launching the solidary Christmas Campaign “A Biocosmetic for CDG Biomedical Research” dedicated to fuelling CDG research. This interview aims to inform the CDG community and the general public about ©NABIA, the project, the products and the social mission.
Download the Portuguese version below:
A Biocosmetic for Biomedical Research
A fundraising campaign for a Clean CURE for CDG
13th December 2016, By Rita Francisco (CDG community social manager. Email: firstname.lastname@example.org ).
My name is Rita Francisco, from the Portuguese Association for CDG (APCDG, www.apcdg.com). In this interview, an initiative of the fundraising campaign “A Biocosmetic for CDG Biomedical Research” , I have the pleasure to be accompanied by Margarida Lopes, ©NABIA Olive Oil Cosmetics CEO. Welcome Margarida—it is most delightful for us to you embark on this journey with us!
Q1: Rita Francisco: NABIA Olive Oil Cosmetics was only officially “born” this year, but the concept and the idea behind it have been long lived. Could you share with us what led you to develop this concept?
Margarida Lopes: I have a great passion for Nature! Since very early on, during my childhood, I was stimulated to look for natural solutions for the health problems that happened. Due to the countryside where I lived (and still do) resorting to nature and native flora were a constant. NABIA emerged from the need to find in the market natural hygiene and cosmetic products, chemical-free and made of plants that we find in Alentejo’s countryside. The link among all products would be olive oil, our “liquid gold”, given its fantastic properties and its worldwide renowned quality.
Q2: Rita Francisco: NABIA researches, develops and commercializes natural, hand-made biocosmetics, although always with a well-established therapeutic objective. Why is that important to you? Could you tell us more about your products?
Margarida Lopes: All our products are always developed taking into consideration the therapeutic properties of the ingredients. Let me give you an example: For Acne, which probably is the most common skin disease, there is our green clay and spirulina soap. Green clay is indicated for oily skins affected by acne, since it eliminates toxins and it also is antibacterial. Spirulina reinforces the purifying properties of green clay, due to its detoxing properties, even effective against heavy metals and atomic radiation. We look for establishing synergies, combining ingredients in a way that their benefits are potentiated and meet our consumers’ needs, bringing them the greatest well-being possible.
Q3: Rita Francisco: Margarida you have a BSc’s degree in Food Engineering and prior to NABIA you have collaborated with other types of projects. What propelled you to getting involved in a project of this nature?
Margarida Lopes: The knowledge I acquired during my BSc’s degree in Food Engineering are an essential tool for the work I develop. The methodologies, formulation and procedures are similar to those used in food processing. The challenge ingredients utilized in diet and applying them under a different perspective really motivated me to go forward with this project. It has been a challenging experience. Also, after concluding me degree, I did a training on cosmetics, phytotherapy and biologic agriculture.
Q4: Rita Francisco: Taking into account NABIA’s vision and mission, having a social impact has always been a goal. Why did you decide to partner with the Portuguese Association for CDG?
Margarida Lopes: I really believe that anyone of us can change the world. NABIA’s mission is also to reinforce the attention on environmental, social and cultural issues, namely on ecology, sustainability, cultural heritage and tradition, the animal cause and social solidarity. We identified APCDG as an association that we found made perfect sense to support. Their activity depends solely on donations and it is fundamental to families who face the drama of living with CDG, since these are rare disease and very little known by the public.
Q5: Rita Francisco: At the moment you are dedicated to making the campaign “A Biocosmetic for CDG Biomedical Research” a success. What are your hopes and expectation for it and are there any other future plans uniting NABIA and APCDG?
Margarida Lopes: I hope this campaign effectively contributes to the evolution of research projects and knowledge on CDG as well as helps to give more visibility to the CDG Community. We have a great will to continue collaborating with APCDG in the future.
Rita Francisco: Thank you so much Margarida for caring about the CDG community and for all the hard work and effort you have been putting into this collaboration. On behalf of CDG patients and professionals, thank you for your commitment and for boosting CDG research! Together, we will keep changing CDG Lives.
Who is ©NABIA?
This portuguese enterprise has a R&D model which is based on ecological, natural and medicinal principles. Their main line of focus are hand-made biocosmetics, whose main ingredient is portuguese olive oil. Ingredient combination is done in a harmonious way and with well-defined therapeutic purposes. All products are registered in national and international databases of quality-control and certifying entities. ©NABIA intends to promote a healthy lifestyle, having a holistic vision of the human-being in close contact and interaction with the environment. Email: email@example.com. Margarida Lopes, NABIA’s CEO, is the person behind the concept and vision.
About the Portuguese CDG and Other Metabolic Rare Disorders Association (APCDG):
Founded in 2010, APCDG (www.apcdg.com) is a patient led and centric non-profit association, whose particular goal is to stimulate new research lines that makes a difference in the lives of patients and families. APCDG initiatives are developed both nationally and internationally. APCDG is committed to finding a cure for Congenital Disorders of Glycosylation (CDG) and related disorders, improving the treatment options and giving information and support to people with CDG, through research, education, awareness programs and advocacy. APCDG top priority is to give a complete and holistic perspective of the patient as a person. Go to our website: www.apcdg.com
#CDGResearch led by CDG families.
All patient ages and situations are considered:
- Patient with liver affectation,
- Patient without liver affectation or
- Situations in which patient/parents do not know if liver is affected.
Take advantage of this opportunity to increase knowledge in one of the major areas unknown among professionals. Complete the online questionnaire available in 4 languages
It only takes 10 minutes to complete at http://www.apcdg.com/project-cdg--liver.html
Call for participation: The Pionner Online CDG Liver Questionnaire for Families by CDG & Allies - PPAIN
#CDGResearch You can now participate to the online Liver CDG Questionnaire (LCDGQ) is now available in English, French, Spanish and Portuguese at http://www.apcdg.com/project-cdg--liver.html .
Limited knowledge about liver involvement in CDG among healthcare professionals exists. And CDG misdiagnosis or delayed diagnosis among hepatologists persists.
United we can change this current situation, and increase our understanding about the main signs, symptoms, management and psychological impact of liver affectation among CDG patients and family members.
The call for participation is open from 11.12.2016 until 21.12.2016.
CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies -PPAIN) continues to grow. This pionneer patient-led network counts now with 2 new important additions: Prof David Coman (MD, Australia) and Prof Bélen Pérez (PhD, Spain).
Prof Coman will be joining Working Groups CDG & Ophtalmology and CDG Patient reported Outcomes (PROMs) (learn more HEREand HERE), whereas Prof Pérez González will contribute to Working Group Clinical and therapeutic CDG research (learn more HERE).
Since its creation, in January 2016, CDG & Allis-PPAIN has been able to gather 30 collaborators - Physicians, researchers and families united by the cause of improving the lifes of CDG Children and adults and, ultimately, striving to find a cure for CDG!
If you are a CDG professional, patient or relative interested in collaborating with us, please contact firstname.lastname@example.org or visit HERE.
For more detailed information, please download the press release below:
#SupportCDGResearch Os eventos NABIA (http://bit.ly/2fjLn84) + APCDG (www.apcdg.com) desta semana - Vamos tomar o Porto de assalto!
Ainda nao comprou os seus presentes de Natal? Aqui ficam as nossas sugestoes solidárias e maravilhosas - Grande Bazar de Natal (https://www.facebook.com/grandbazar16/?fref=ts) a 10/12 (sábado) and Pink Market (https://www.facebook.com/pinkmovement/?fref=ts) a 11/12 (domingo).
#SupportCDGResearch This week's NABIA (http://bit.ly/2fjLn84) + APCDG (www.apcdg.com) events - We are taking Porto by storm!
Haven't bought your Christmas gifts? Here's our solidary and marvellous suggestions - Grande Bazar de Natal (https://www.facebook.com/grandbazar16/?fref=ts) on 10/12 (saturday) and Pink Market (https://www.facebook.com/pinkmovement/?fref=ts) on 11/12 (sunday).
#RareDiseasesNews:What is the future of funding access to #OrphanDrugs?
Belgium and the Netherlands set an important example - read the full article at http://bit.ly/2gxxOls
#RareDiseasesNews: "The best scientific rationale and genuine patients’ hopes and needs" is the winning combination for better healthcare, more therapeutic solutions and, ultimately, for more CURES!
How can we achieve more and better #PatientInvolvement? http://bit.ly/2gaajBu
Write something about yourself. No need to be fancy, just an overview.