---

CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN)
Where families’ own needs and ideas are transformed into research projects.

---

If you'd like to receive a full copy of any of these papers, please write to sindromecdg@gmail.com 

Scientific Publications:

---

THERAPIES

​CDG Therapies: From Bench to Bedside.​

27/04/2018

Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review

29/11/2018

Find the abstract HERE and order the complete article HERE.

Find the abstract HERE and order the complete article HERE.

---

CDG DIAGNOSIS

The challenge of CDG diagnosis

09/11/2018

OPHTHALMOLOGY

Keeping an eye on congenital disorders of O-glycosylation: a systematic literature review

01/02/2018

Find the abstract HERE and order the complete article HERE.

Find the abstract HERE and order the complete article HERE.

---

PATIENT-CENTRICITY IN CDG CARE & RESEARCH

CARDIOLOGY​

Public and patient involvement in needs assessment and social innovation:a people-centred approach to care and research in congenital disorders of glycosylation

29/09/2017

Find the abstract HERE and order the complete article HERE.

Cardiac complications of congenital disorders of glycosylation (CDG): a systematic review of the literature

19/07/2017

Find the abstract HERE  and order the complete article HERE.

---

HEPATOLOGY

An Electronic Questionnaire for Liver Assessment in Congenital Disorders of Glycosylation (LeQCDG): A Patient-Centered Study.

26/07/2018

Find the abstract HERE  and order the complete article HERE.

Liver involvement in congenital disorders of glycosylation (CDG).  A systematic review of the literature

20/01/2017

​

---

​You can find the abstract HERE and order the complete article HERE

---

IMMUNOLOGY

CDG and immune responde: From bedside to bench and back.

16/05/2019

Immunological aspects of congenital disorders of glycosylation (CDG): A review

28/09/2016

Find the abstract HERE and ​order the complete article HERE.

Find the abstract HERE  and order the complete article HERE.

---

CONFERENCES

SPDM2016​

SPDM2017​

WG CDG & Liver

SSIEM 2016

WG CDG & Liver

International CDG Scientific Symposium 2017
World Orphan Drug Congress 2017 and 2018
SPDM Symposium 2018
ECDR Congress 2018

​SPDM Symposium 2018

WG Pharmacological Chaperones

International CDG Scientific Symposium2017
​SPDM Symposium 2018

WG CDG & Eyes

International CDG Scientific Symposium 2017
SPDM Symposium 2018

WG CDG & Patient-reported Outcomes

---

Other resources

Find more patient and community-friendly resources HERE. 
They are FREE, available in several languages and ready-to-be used, shared or printed.

---

Now you can also share CDG&Allies concept!

Please complete some quick details to have access to our resources:

Support our research, 
​advocacy, awareness and
​education efforts now!

Our work is publicly available to help the CDG community and related rare disease communities. Importantly, we do not receive government funding. We rely solely on donations in order to continue our projects. Consider to make a donation using Paypal, debit or credit card or bank transfer.

DONATE

Get in Touch With Us